ShiningLight: brain injury with gabapentin WD want off others

[ShiningLight]

On 2/22/2022 at 12:12 PM, Blossom71 said:

Taking an additional week off work sounds like a wise move given everything you’ve been dealing with.

 

 

 

Yes. Taking that second week was the best thing I could have done for myself. It still wasn't easy to go back, but I was ready and my desk was set up! I don't remember if I mentioned here, I got a sit/stand desk. It's great.

[Carmie]

On 3/8/2022 at 4:39 PM, ShiningLight said:

It's been a bit of an adjustment. Life just keeps coming. Having some family dynamics problems related to my dad's health, he's getting dementia. My dog is sick and eating poorly ever since the move a month ago. I'm getting a second opinion at the vet Thursday. I've tried a lot with him. Chicken & rice diet for a few days, rx tummy diet, pain meds, Pepcid, probiotics, and lots of structure and love. It is so frustrating and worrisome since I had to euthanize my other dog just in December.

 

 

I'm frustrated as I want to restart my Zoloft taper but not feeling quite ready yet. The whole housing situation really shook me up and made me realize I have a crummy support system in real life and now with my dad's memory problems it's worse. He lives a few hundred miles away. One positive step I'm taking for social support: I'm making an effort to meet my new neighbors. This is a very friendly neighborhood, people introduce themselves to each other, it's kind of amazing considering my former neighborhood.

Life is definitely hard ShiningLight, 

 

I’m getting hit from sides too, on top of withdrawals. One hour at a time does it. 
 

Glad you’re making new friends in the neighbourhood. 
 

I’m sorry about your dad. My husband has dementia and lots of other health problems and is in a care home. Haven’t been able to see him since the beginning of December because of having to stay in isolation. I can’t risk being around him or his support workers, they’ve all had Covid and if I got it I’d end up in hospital.

 

I’ve been in isolation since omicron went nuts, though I did go for a walk to a friend’s place this week to drop of something, I stayed outdoors with a mask on though. 
 

I hope your dog is better soon🧡

[ShiningLight]

On 3/8/2022 at 11:43 PM, Carmie said:

Life is definitely hard ShiningLight, 

 

I’m getting hit from sides too, on top of withdrawals. One hour at a time does it. 
 

Glad you’re making new friends in the neighbourhood. 
 

I’m sorry about your dad. My husband has dementia and lots of other health problems and is in a care home. Haven’t been able to see him since the beginning of December because of having to stay in isolation. I can’t risk being around him or his support workers, they’ve all had Covid and if I got it I’d end up in hospital.

 

I’ve been in isolation since omicron went nuts, though I did go for a walk to a friend’s place this week to drop of something, I stayed outdoors with a mask on though. 
 

I hope your dog is better soon🧡

 

Wow @CarmieI didn't know you had all of this going on. Thanks so much for the love. I'm sorry it took me so long to respond. I have had so much on my plate.

 

It really helped to see your reply as I am left with the feeling that you really understand. The social isolation is so hard. I have chosen to remain largely so because of my immune deficiency. But it can be brutal. I do go get takeout and I do go to the store, but that's about it. I'm going to pop in on your thread and see how you're doing.

 

I've continued to struggle with my business which has just been gutting me. I am afraid.

 

On the good news front, I do still love my place and my dog is still with me though still having health problems.

[ShiningLight]

Doing better here and my dog is stabilizing! He no longer needs the appetite stimulant. He is still coping with GI upset but slowly improving. I too am slowly improving and stabilizing from all the housing drama I went through since November.

 

I'm also feeling excited about my taper. During my most recent attempt at tapering zoloft (in 2014--hardly recent--at that time I told my then therapist never to let me go off again) when I hit 100 mg I was so irritable and dysregulated that I felt like screaming at the junk mail. I'm not feeling that kind of irritability now which makes me hopeful and happy. I also know that Zoloft is very sneaky.

 

I have a feeling that on the way down I'm going to be feeling better and better, more like myself, but also with withdrawal interspersed in there. I have to remember I've been on this for decades, and I am growing a new brain.

[Ariel]

Hi @ShiningLight

New to your thread, stopping by to say hello. 

 

19 minutes ago, ShiningLight said:

I have to remember I've been on this for decades, and I am growing a new brain.

 

Thank you for this beautiful, simple, effective formulation. Instant classic and a welcome addition to my toolkit of handy motivational quotes.

I will be telling myself this regularly... I believe that means you'll be receiving healing royalties from the universe. Cha-ching! 

 

Best of luck to you with your taper,

A.

 

[ShiningLight]

@ArielGlad you enjoyed it. Alas I can't claim the concept of growing a new brain as a ShiningLight original! The idea has been explained on here in an excellent, legendary post that explains how the brain remodels itself to accommodate the presence of the drugs. 

 

Best of luck to you too, luck is definitely one factor in this process! 🤪

[Ariel]

Hi @ShiningLight

Thinking of you <3

[Carmie]

Hi ShiningLight, 

 

Just thought I’d pop over and see how you’re doing? How is life treating you today?

 

Sending hugs your way🤗

[Ariel]

Hi @ShiningLight

How are you going?

Thinking of you 

[Carmie]

Hi Dear ShiningLight, I’m still thinking of you and hope you’re doing okay🧡

[ShiningLight]

@Ariel and @Carmie thank you so much for thinking of me! Sorry for being AWOL! I didn't see the alerts. I have been obsessively following covid developments on twitter so spending a lot of time on there. 

 

Carmie, I relate to your autoimmune troubles. I'm having an autoimmune flareup myself with skin eruptions/granuluma annulare, joint pain, and fatigue. I also have what appears to me to be a fibrosing alopecia spot on my head. I probably need to get it biopsied to be sure that's what it is. All of this sounds very lupus-like to me. Some time ago my doctor said I may have this. Did a blood test and glad it was negative but then this stuff happens and I wonder. Apparently it's difficult to diagnose.

 

Did you know that some medications can cause lupus? That surprised me. I didn't see antidepressants on the list though.

 

The interesting thing is that this same immune reaction is almost exactly the same reaction I got after the covid vaccine. Flareup of granuloma annulare, joint pain, and fatigue. Just minus the headache. So weird. I've tested for covid 3 times in the past week and thankfully that is negative. I've had this kind of immune thing before so I don't think it's due to the vaccine.

 

I love my new rental aside from the roaches, mostly outside but a number found in the garage. This is a big problem in my area of California. I started a contract with the exterminator, as much as I didn't want to due to chemical sensitivities. Now the roaches are dead but there are a lot of them and they are 1.5 inches--huge and gross, I think they're called Turkestan roaches? I have to pick them up and put them in the trash otherwise their carcasses will attract their pals. It's just so gross.

 

As far as tapering goes, I've been holding for two months. My baseline has improved, but then a minor frustration happens and I want to cry or I get enraged and things get totally unmanageable for an hour, a few hours, or the rest of the day. These minor frustrations happen at least several times a week! For example, I made an Instacart order, it went through, and then immediately I got a text that my order was canceled (due to overly aggressive fraud prevention tactics). I tried to validate my account but I hit some roadblocks with that. And I had this wave of just feeling that I *could not* cope. So I don't seem to be handling stress very well. Zero frustration tolerance.

 

I'm at 100 mg of the zoloft. This is the lowest dose I've been on since my last tapering attempt about 7 years ago! I am still feeling very good about that! I can't wait until I feel ready to cut again. I can feel that I'm getting close. When I'm ready, I will transition a small part of the 100 mg to liquid, wait 2 weeks, then cut about 8% from the liquid part.

 

I feel on a precarious perch with my financial situation and this is causing me a lot of stress. Right now things are ok, but I'm kind of just barely making it and struggling to meet expenses. I just don't feel secure and I hate that feeling. On the positive side, in June, my business had the best month I've ever had, so that feels really good. It's slowly improving, it's just scary and sometimes hard to keep the faith. 

 

Like many, I am really struggling with everything going on the world right now. There's so much political, social, and viral toxicity, and the war in Ukraine, hunger crisis, collapsing healthcare system, corruption, gun violence, climate change, and the pollution of the social space. It's all too much. And so incredibly sad. I never thought I'd see this in my lifetime. I'm glad I'm not a young person. I never anticipated that I would feel so tired of life and fed up in middle age but I really do! I am not suicidal, but sometimes I can't help feeling that death wouldn't be the worst thing to be rid of all this suffering. Of course, if I have a health scare, it seems likely that I would rapidly change my philosophy on that! 🤣

 

I've doubled down on my covid precautions again as in addition to this weird autoimmunity, I also have a primary immune disorder, not making enough immunoglobulin A. I got a mask with goggles. I do curbside and instacart as much as possible. I pretty much don't go anywhere or see anyone because I don't know anyone who is careful enough for me to be comfortable around them. I hung out with a friend and she was maskless in her home. I took off my mask to eat dinner. She later told me that a relative just tested positive for covid. That's when I stopped seeing her and stopped making efforts to see others. I was so upset for having put myself in that situation. I worry about covid also because I don't have sick time or disability since I work for myself.

 

My standard for social activity is maskless outside. Don't know anyone who wants to do that, so I'm alone. I have been doing puzzles and diamond painting and playing with the dog, who is doing well. But I still get lonely and bored.

 

I have a dental appointment coming up to get some crowns and I am very stressed about it due to covid. I will bring my hepa filter with me but I am still very worked up about it with BA5 spiking here.

 

As far as gratitude, the things I am grateful for are my rental, my independence with my work and being able to work from home, my dog, and freedom--ie , the availability of information, the internet, etc. And relative health.

[Ariel]

Hi @ShiningLight

Thank you for your update. It's good to read you. 

 

17 hours ago, ShiningLight said:

My baseline has improved, but then a minor frustration happens and I want to cry or I get enraged and things get totally unmanageable for an hour, a few hours, or the rest of the day. These minor frustrations happen at least several times a week! For example, I made an Instacart order, it went through, and then immediately I got a text that my order was canceled (due to overly aggressive fraud prevention tactics). I tried to validate my account but I hit some roadblocks with that. And I had this wave of just feeling that I *could not* cope. So I don't seem to be handling stress very well. Zero frustration tolerance.

 

I can really relate to this. Classic WD, very trigger-happy. 

It sounds like you are handling "not handling stress very well" pretty well. This is not easy to do, and you are doing yourself a great service by managing the meta-level of things. It's often the only thing we can hope to have any influence over in WD, trying to control our reactions and meta-distress when we cannot control the underlying WD reactivity and stress. So well done, you, and I hope you give yourself lots of credit for this. 

 

17 hours ago, ShiningLight said:

I feel on a precarious perch with my financial situation and this is causing me a lot of stress. Right now things are ok, but I'm kind of just barely making it and struggling to meet expenses. I just don't feel secure and I hate that feeling. On the positive side, in June, my business had the best month I've ever had, so that feels really good. It's slowly improving, it's just scary and sometimes hard to keep the faith. 

 

I'm sorry things are so iffy in regards to finances. I can relate to this, too. It can indeed be so stressful. I understand that it feels scary and am glad to hear it's slowly improving. Treat yourself with kindness and compassion. You are working really hard, there's a lot on your plate, and you're doing your best. You're doing everything you can. You're very brave and strong!

 

17 hours ago, ShiningLight said:

Like many, I am really struggling with everything going on the world right now. There's so much political, social, and viral toxicity, and the war in Ukraine, hunger crisis, collapsing healthcare system, corruption, gun violence, climate change, and the pollution of the social space. It's all too much. And so incredibly sad. I never thought I'd see this in my lifetime. I'm glad I'm not a young person. I never anticipated that I would feel so tired of life and fed up in middle age but I really do! I am not suicidal, but sometimes I can't help feeling that death wouldn't be the worst thing to be rid of all this suffering. Of course, if I have a health scare, it seems likely that I would rapidly change my philosophy on that! 🤣

 

This is one of those stressors that we do have significant control over. 

 

It is a viable option: not to watch the news; turn off news media notifications; unsubscribe from distressing newsletters and negative social media feeds; stop feeding the breaking-news doom-scrolling impulse. It is possible and in many cases advisable to OPT OUT.

 

I am speaking from personal experience; I don't follow any of that stuff. If there's something specific I need to know I will look it up and find it. I take what I need and get out. As for any major news development that concerns me directly, the information has a way of finding me. Shielding myself from unnecessary internet stress is a proactive, productive way for me to take charge of my healing process. There is so little I have control over in WD, but this is one of the things I can do to help myself. 

 

I know in some instances for work reasons it's not possible to be offline and some social media presence is integral to their business model, etc. If one must engage with potentially taxing internet technology due to professional demands, the name of the game is not so much opt out as it is to be highly selective and acutely aware of screen time, content, messaging, with what and with whom one chooses to spend one's energy. A lot of online/plugged-in behavior is fueled by force of habit, and it is possible to change habitual behavior and develop new, healthier routines, build new, better habits.

 

Cultivating awareness is key, becoming mindful of how one is spending one's time online. Something that can really help with cultivating awareness is practicing staying grounded in one's body while one is doing online stuff, be it taking lots of breaks to breathe and center, maybe doing a few minutes of exercises to get blood flowing, or setting up a timer as a reminder to to take a break and stretch or walk around the room. Anything that gets us out of the disembodied digital and back into our bodies into embodied experience of physical reality. Again, just sharing from personal experience -- I find this really helpful as a way to prevent getting "sucked in" to the screen and getting lost and overwhelmed by the virtual universe of infinite information and seemingly neverending fear-mongering sensationalist streaming (streaming sensationalism).

 

Remember that all the content being pushed on you is not necessarily real or true or important, it's largely based on an algorithm designed to hijack your attention and keep your eyes riveted to the screen. YOU HAVE THE POWER. Your body is true. YOU ARE NATURE. Your body has evolved over at least hundreds of thousands of years (arguably billions of years, depending on how you approach it) -- that is true intelligence. Cellphones and computers and the internet have been around for an entirely insignificant period of time in comparison.

YOU WERE HERE FIRST. Remember that. YOU HAVE THE POWER. 

 

RAH RAH! Hahaha

 

In case that comes off sounding like a lecture, please know it's not intended that way. No holier-than-thou here at all. Quite the contrary, it's something I feel passionately about because it affects me, too; it's something that takes effort on my part, too.  

I offer these thoughts from a place of solidarity and support, based on personal experience. 

Ultimately, in WD and with any chronic illness and healing where it's vital to manage our stress levels -- if something we're doing is helpful and benefits us, great. If we're doing something that stresses us out, better to stop that activity, if at all feasible, or at least cut back as much as possible. 

 

This is getting long so I'll wrap it up. 

 

I hear you on the complex health issues. It's a lot to deal with, especially with the many unknowns and the uncertainty that extends into social relationships, interpersonal interactions, and how it can affect trust concerns in our communities. My heart goes out to you for the cumulative stress of what you're juggling. Please be very gentle and forgiving with yourself, take tender care. 

 

I hold space for your experience and am in awe of your courage and tenacity. You are amazing!

 

17 hours ago, ShiningLight said:

As far as gratitude, the things I am grateful for are my rental, my independence with my work and being able to work from home, my dog, and freedom--ie , the availability of information, the internet, etc. And relative health.

 

Thank you for this lovely gratitude list. It lifts my spirits and inspires me to remember what I am grateful for. 

 

Thanks again for checking in to post your update. 

You're really working hard and doing a great job through adverse circumstances. I hope you can see what I see, even just a little bit. You are overcoming, little by little, and healing is happening.

Healing is happening all the time, even when we don't consciously feel it. 

 

I am wishing good things for you and thinking nice thoughts in your direction. 

Sending support and healing vibes,

A.

 

 

[Carmie]

On 7/10/2022 at 3:18 AM, ShiningLight said:

 

@Ariel and @Carmie thank you so much for thinking of me! Sorry for being AWOL! I didn't see the alerts. I have been obsessively following covid developments on twitter so spending a lot of time on there. 

 

Carmie, I relate to your autoimmune troubles. I'm having an autoimmune flareup myself with skin eruptions/granuluma annulare, joint pain, and fatigue. I also have what appears to me to be a fibrosing alopecia spot on my head. I probably need to get it biopsied to be sure that's what it is. All of this sounds very lupus-like to me. Some time ago my doctor said I may have this. Did a blood test and glad it was negative but then this stuff happens and I wonder. Apparently it's difficult to diagnose.

 

Did you know that some medications can cause lupus? That surprised me. I didn't see antidepressants on the list though.

 

The interesting thing is that this same immune reaction is almost exactly the same reaction I got after the covid vaccine. Flareup of granuloma annulare, joint pain, and fatigue. Just minus the headache. So weird. I've tested for covid 3 times in the past week and thankfully that is negative. I've had this kind of immune thing before so I don't think it's due to the vaccine.

 

I love my new rental aside from the roaches, mostly outside but a number found in the garage. This is a big problem in my area of California. I started a contract with the exterminator, as much as I didn't want to due to chemical sensitivities. Now the roaches are dead but there are a lot of them and they are 1.5 inches--huge and gross, I think they're called Turkestan roaches? I have to pick them up and put them in the trash otherwise their carcasses will attract their pals. It's just so gross.

 

As far as tapering goes, I've been holding for two months. My baseline has improved, but then a minor frustration happens and I want to cry or I get enraged and things get totally unmanageable for an hour, a few hours, or the rest of the day. These minor frustrations happen at least several times a week! For example, I made an Instacart order, it went through, and then immediately I got a text that my order was canceled (due to overly aggressive fraud prevention tactics). I tried to validate my account but I hit some roadblocks with that. And I had this wave of just feeling that I *could not* cope. So I don't seem to be handling stress very well. Zero frustration tolerance.

 

I'm at 100 mg of the zoloft. This is the lowest dose I've been on since my last tapering attempt about 7 years ago! I am still feeling very good about that! I can't wait until I feel ready to cut again. I can feel that I'm getting close. When I'm ready, I will transition a small part of the 100 mg to liquid, wait 2 weeks, then cut about 8% from the liquid part.

 

I feel on a precarious perch with my financial situation and this is causing me a lot of stress. Right now things are ok, but I'm kind of just barely making it and struggling to meet expenses. I just don't feel secure and I hate that feeling. On the positive side, in June, my business had the best month I've ever had, so that feels really good. It's slowly improving, it's just scary and sometimes hard to keep the faith. 

 

Like many, I am really struggling with everything going on the world right now. There's so much political, social, and viral toxicity, and the war in Ukraine, hunger crisis, collapsing healthcare system, corruption, gun violence, climate change, and the pollution of the social space. It's all too much. And so incredibly sad. I never thought I'd see this in my lifetime. I'm glad I'm not a young person. I never anticipated that I would feel so tired of life and fed up in middle age but I really do! I am not suicidal, but sometimes I can't help feeling that death wouldn't be the worst thing to be rid of all this suffering. Of course, if I have a health scare, it seems likely that I would rapidly change my philosophy on that! 🤣

 

I've doubled down on my covid precautions again as in addition to this weird autoimmunity, I also have a primary immune disorder, not making enough immunoglobulin A. I got a mask with goggles. I do curbside and instacart as much as possible. I pretty much don't go anywhere or see anyone because I don't know anyone who is careful enough for me to be comfortable around them. I hung out with a friend and she was maskless in her home. I took off my mask to eat dinner. She later told me that a relative just tested positive for covid. That's when I stopped seeing her and stopped making efforts to see others. I was so upset for having put myself in that situation. I worry about covid also because I don't have sick time or disability since I work for myself.

 

My standard for social activity is maskless outside. Don't know anyone who wants to do that, so I'm alone. I have been doing puzzles and diamond painting and playing with the dog, who is doing well. But I still get lonely and bored.

 

I have a dental appointment coming up to get some crowns and I am very stressed about it due to covid. I will bring my hepa filter with me but I am still very worked up about it with BA5 spiking here.

 

As far as gratitude, the things I am grateful for are my rental, my independence with my work and being able to work from home, my dog, and freedom--ie , the availability of information, the internet, etc. And relative health.

Good idea to be AWOL every now and again ShiningLight, it can get a bit too much sometimes reading everyone’s sad stories.

 

Sounds like checking Covid developments on twitter is keeping you busy. I don’t have a twitter account, but I go on there and check different things, not so much the doom and gloom though. It might be a good idea to have a little break from looking at all the horror stories on the news. I don’t actually watch the news, except for little snippets that come through on social media. I don’t think it’s good for our well-being. We are stressed enough in withdrawals and with other things going on i our lives. 

I haven’t seen masks with attached goggles, only seperate ones. 
 

I’m really sorry you’re having autoimmune flares too, I hope they settle soon. Mine doesn’t seem to want to settle, it’s been nine months. Nevertheless, I know it will one of these days so that’s what I’m focusing on now. Yes, I knew that medications can cause autoimmune disorders. I think mine was triggered though due to trauma and C-PTSD, the same with CFS. 
 

Financial problems can certainly be stressful, I’m glad you had a good month with your business though. We can only live a day at a time and I’m grateful I always have a roof over my head, food in my stomach and clothes on my back. I hope you manage to continue to meet expenses, everything is just so expensive these days, isn’t it?

 

I’m in the same predicament as you because of all the viruses around, I pretty much stay away from people, except for meeting them outdoors in the park around the corner from my place. If I got Covid it would be very serious because of my lungs. I do go to medical and health appointments though, but that’s the only indoor places I go. There’s certainly a risk of catching something there, but I need to go to those appointments. I’m sorry your friends won’t meet you outdoors, is there a nice park near your place that might be good for a catch up. 
 

Good on you for doing puzzles and diamond paintings, I’ve done so many diamond paintings, but I’ve had to stop for now as my RSI started playing up again. I’ve got a little notebook that was given to me as a pressie and it’s got a little diamond painting on the front of it, I’ll do that as it’s not much. A friend dropped off a 500 piece jigsaw puzzle at my front door too, that should take me a billion years to finish with my brain😁

 

All the best at the dentist and thanks for sharing your gratitude list🧡

[ShiningLight]

@Arieland @Carmie thank you so much for your generous responses. They warmed my heart. A lot to relate to. I will write more when I can.

 

Yes, taking a break from the disastercycle is a good idea. There's not much point in me obsessively following covid anymore. I know what I am doing for my own protection. That's not going to get a lot of validation out there and reading about people who don't take it seriously just makes me chronically angry.

 

I decided I'll probably take one more month at current dose and then reassess due to these flash flood emotional reactions. 

[Carmie]

3 hours ago, ShiningLight said:

@Arieland @Carmie thank you so much for your generous responses. They warmed my heart. A lot to relate to. I will write more when I can.

 

Yes, taking a break from the disastercycle is a good idea. There's not much point in me obsessively following covid anymore. I know what I am doing for my own protection. That's not going to get a lot of validation out there and reading about people who don't take it seriously just makes me chronically angry.

 

I decided I'll probably take one more month at current dose and then reassess due to these flash flood emotional reactions. 

Two good choices you’re making there dear ShiningLight, don’t look up so much of the news anymore, it will just keep stressing you out more.

 

As I mentioned, I’m pretty much staying away from people too because of my lungs, except for meeting outside or going to medical and health appointments I need to go to. I take precautions as best I can.
 

Reading about Covid non stop is only making you more anxious and panicky, but it doesn’t change the fact that there’s a lot of it around. We can’t stop it. I’m concerned about it too because if I caught it, or any virus for that matter, it could be very serious for me, but reading about it continually doesn’t change the situation. We’ve got enough stress in our lives, probably not a good idea to add to it. 
 

And number two, I’m glad to hear that you’re going to hold longer, when you’re feeling extremely stressed, like you are at the moment, it’s not a good idea to taper, as you know. I’ve held for really long periods of time when I was under immense stress too. Good choice!

 

I hope you will eventually be feeling a little less stressed. It’s pretty much an hour at a time some days, or even a minute at a time. 
 

Sending hugs your way🤗

[ShiningLight]

I have c diff infection. So miserable. 💩 every hour or 90 min. Awful. Trying to chase hydration. Dehydrated anyway as the infection sucks water into your gut. Constant headache.

 

Was diagnosed yesterday and started vancomycin last night. This is the 3rd time I've had this infection in 12 years. Most recently 2015 or 2016. 

[ShiningLight]

Doing better. Improving.

[Ariel]

Hi @ShiningLight

 

I'm so sorry to hear about the C. Diff. infection. What bad luck!

I am, of course, glad to hear you are improving. Thank you for posting that update. 

At the same time, I feel for you that you've had this infection three times in the last 12 years. That must be so challenging, I cannot imagine. 

 

For what it's worth, I know of people who suffered recurring CDIs for years until they got an FMT procedure, which cured them completely.  

I'm neither a doctor nor an expert and I'm not in a position to advocate for anything one way or another. Just wanted to mention it (although you may already be familiar with that avenue of treatment). 

 

I trust you are taking excellent care of yourself and going gently. 

Holding space for your experience and sending healing vibes for continuous recovery <3

 

[Chlo]

On 7/26/2022 at 4:56 PM, ShiningLight said:

I have c diff infection. So miserable. 💩 every hour or 90 min. Awful. Trying to chase hydration. Dehydrated anyway as the infection sucks water into your gut. Constant headache.

 

Was diagnosed yesterday and started vancomycin last night. This is the 3rd time I've had this infection in 12 years. Most recently 2015 or 2016. 

Hello @ShiningLight I also have C-diff. Was just informed yesterday. They have prescribed me Flagyl. I noticed you are taking vancomycin. I was wondering if the vancomycin has caused an uptick in your wd symptoms like heightened anxiety? I also understand that our gut and brain communicate with each other and this could be a reason for elevated anxiety.  I did a med check for interactions because my meds, and it showed the Flagyl could have an effect,  but the vancomycin should be ok. What is your experience with this antibiotic? Do you think it will be ok for me to take?

thank you for any advice given 🌻

[ShiningLight]

@Ariel Trust me, I am absolutely considering a fecal transplant! 😀 Thank you for telling me about it just in case I wasn't aware.

 

@Chlo oooh I'm sorry that you have this too right now. cdiffdiscuss.org is the best place to get answers. Flagyl aka metronidazole is no longer recommended as the first line treatment for an initial infection due to increasing resistance, this information is publicly available. See https://academic.oup.com/cid/article/73/5/e1029/6298219?login=false  Dificid (very expensive) is now the fist line treatment for first infection, followed by vancomycin as a second choice. I am not happy with them having prescribed Flagyl for you, that is an outdated recommendation by *years* if not a full decade. 😈

 

My withdrawal has been pretty stable recently as I've been in a hold. But am I having increased anxiety? Absolutely. It sucks. I think it's actually from my gut flora being destroyed by the infection, or the vancomycin, or both. Severe anxiety and PTSD is not unusual with this infection. I kind of just try to take it as it is and say, 'I know why this is happening, this is just my gut flora [or lack thereof] talking to me.' It does help a bit. It's a miserable, unpleasant experience. 

[ShiningLight]

In looking up the treatment guidelines for you @Chlo, I see that I am also not being treated by the current recommendations for where I am in the illness. This is really infuriating and reawakens my trauma from my first infection, where the emergency doctor prescribed too low of a dose and the infection came surging back right in the middle of treatment, prolonging the course.

 

I *asked* the regular doctor I saw this time to please consult with GI or Infectious Disease specialists regarding the protocol he was going to put me on. He didn't respond and just put me on a 14 day course of vancomycin. Now I look up the guidelines and find out I too am not being treated by them. This is absolutely infuriating.

 

I am so exhausted with all of this. The infection causes fatigue, and the medication causes fatigue, and the nutritional deficiencies cause fatigue, I am just so done.

 

How am I supposed to recover from the years lost to antidepressants when I'm still losing years to antidepressants, to infections, and to covid because I have radically changed my life because too many people don't care about protecting immunocompromised people? 

 

 

 

 

[Ariel]

@ShiningLight

Thinking of you <3

How are you going with everything? (No pressure to reply.)

Sending hugs and healing vibes <3

 

[ShiningLight]

@Ariel thank you so much for thinking of me, how nice to see your reply! 😊

My doctor actually consulted Infectious Diseases who provided some clarity as far as what is considered a c diff relapse and what is considered a new episode. Relapse and thus escalating treatments occur for reinfection up to about 90 days. Beyond that it's considered a new incident. I last had this about 7 years ago so it's a new incident. Hard to believe it's been that long ago. 

 

My diarrhea stopped thank god. I still have some nausea off and on. The worst thing is the crushing fatigue. I finished the antibiotic Monday. I just work and then get in bed, that's it. Can't even walk the dog much. Just so tired. A little brain fog too. I've been holding my Zoloft dose for some time, regarding which I'm a bit resentful because I want to hit the road again. But I'm in no position right now with this fatigue and my gut having been decimated, which of course affects my mood. But honestly right now I'm too exhausted to even feel depressed or anxious. Just kind of numb and blunted.

[Ariel]

@ShiningLight

 

8 hours ago, ShiningLight said:

My doctor actually consulted Infectious Diseases who provided some clarity as far as what is considered a c diff relapse and what is considered a new episode. Relapse and thus escalating treatments occur for reinfection up to about 90 days. Beyond that it's considered a new incident. I last had this about 7 years ago so it's a new incident. Hard to believe it's been that long ago. 

 

Feces things first. 

Are FMTs considered an escalating treatment, recommended primarily for what's considered relapse? 

My curiosity for all-things-poop knows no bounds! 

(Btw, aren't you the one who commented on the humorousness of "BM slide" as noted in a member drug signature? I had often thought the same thing but at the time was too much in the (water) closet to share my thoughts. I believe that's how we first "met". How's that for a meet cute? Lol  And look at us now, here we are talking about FMTs. It was meant to be)

 

8 hours ago, ShiningLight said:

My diarrhea stopped thank god. I still have some nausea off and on. The worst thing is the crushing fatigue. I finished the antibiotic Monday. I just work and then get in bed, that's it. Can't even walk the dog much. Just so tired. A little brain fog too. I've been holding my Zoloft dose for some time, regarding which I'm a bit resentful because I want to hit the road again. But I'm in no position right now with this fatigue and my gut having been decimated, which of course affects my mood. But honestly right now I'm too exhausted to even feel depressed or anxious. Just kind of numb and blunted.

 

Ugh, I'm so sorry you're been dealing with all of this, ShiningLight.  

You've had so much going on. 

Sounds wise to hold on your current dose until you're feeling strong and stable, or at least significantly stronger and more stable.

 

Wishing you good, restorative rest and moments of relief, may you find respite and get well soon!

Peace and healing vibes <3

A.  

[ShiningLight]

On 8/12/2022 at 12:49 AM, Ariel said:

@ShiningLight

 

Feces things first. 

Are FMTs considered an escalating treatment, recommended primarily for what's considered relapse? 

My curiosity for all-things-poop knows no bounds! 

(Btw, aren't you the one who commented on the humorousness of "BM slide" as noted in a member drug signature? I had often thought the same thing but at the time was too much in the (water) closet to share my thoughts. I believe that's how we first "met". How's that for a meet cute? Lol  And look at us now, here we are talking about FMTs. It was meant to be)

 

 

Ironically, yes, I am the one who commented on BM slide! 🤣 Funny that you remembered that.

 

Yes, FMT are considered an escalating treatment. Though some people prepare them at home from family etc! I do think different organizations consider it differently, for example, my former GI told me that I should be on vancomycin taper and pulse regimen if I ever got c diff again. But I think it makes more sense what the current infectious disease doctor says, ie only use that for a relapse. 

 

I don't think you can really cure c diff susceptibility until you cure the underlying gut vulnerability. The gut vulnerability is the problem, because c diff is everywhere, probably we are all ingesting it from time to time. I think it's a little like TB...the circumstances have to be exactly right to get sick from it. You'd think FMT would cure the underlying problem, and it does, but you can still get c diff again if you take antibiotics after FMT. In that sense, it's not the permanent cure I am hoping for. I haven't entirely ruled it out to do at some point, but I don't think it's wise for me to do it right now, since once done, you can't undo it. With how my system works I would be concerned about being one of the few who develop autoimmune disease afterwards. Especially since I already have autoimmune problems.

 

I'm doing a lot better now, my fatigue has improved! Hoping I have finally turned a corner. 

[ShiningLight]

I decided to make a cut of 6.5 mg today. It's a fine line between waiting for a good time and realizing there is never really a good time. I was telling a friend, the thing to do is just make sure you're not choosing a grossly negligent time. 😆 I hope the blasted SSRI apathy decreases as I go down. That is the worst side effect of the drug, it has stolen decades of my life. Time to get on with it.

[Ariel]

Wow @ShiningLight

I admire your moxie. RESPECT. 

Hope you are feeling better from illness, and good luck with the cut!

Healing vibes <3

[ShiningLight]

Whoooooops. I just realized that I accidentally cut down to 68.5 for a few days. I went to log my wd symptoms on my spreadsheet and I saw '1 50 mg pill, 1 25 mg pill, 1/2 25 mg pill, 6 mg of liquid.' I was like, 'wait, that doesn't sound right with what I've been seeing in my box.' I looked in my pill box and sure enough, only 1 50 mg pill and 1/2 25 mg pill. I had been thinking that the 25 mg pills were 50 mgs so I only put in half of one.

 

I was wondering why I was getting a few brain zaps and was having trouble on my walk due to weird muscle spasms and also weird intense pain in my heels at night. But also feeling emotionally more energetic and happy and hopeful while on this lower dose. I felt like the cloud lifted. I felt brighter. I felt like I had agency. I was like, 'whoa, what's that?!' Imagine if I hadn't been trying to move through several decades of my life with my hands tied behind my back! 😭

 

What I detest about SSRI tapers--even if you survived a bigger drop for the first few days, you can't guarantee that that will continue. In my experience, you can pretty much guarantee that it won't continue, and 4-8 weeks later it will come bite you in the butt so hard you won't know what hit you.

 

I usually take Zoloft in the morning, but tonight I took a rescue dose of 12.5 mg, half of what I left off for 5 days. Tomorrow I'm going to go back up to 93.5 as originally intended. 😔

 

 

Edited August 20, 2022 by ShiningLight
adding more stuff

[ShiningLight]

Just checking in. I've been absolutely exhausted. I had to take the week off work. The fatigue is a bunch of things I think. I'm still regrowing my gut microbiome post c diff. A week ago, I had the 5th vaccine and I always get fatigue from those. Cut Zoloft a few weeks ago. And fall...I love, love, LOVE fall but if I'm gonna get a fatigue episode, that's when it happens.

 

I can't get much done in a day. I went to my office to pick up mail today. It's about 15 miles away. Wanted to stop off and get gas on the way home. All kinds of nope. Just came home and did nothing. Fatigued enough to do nothing other than putz around, but (thankfully) not fatigued enough to sleep all day. There's no timetable for fatigue like this which always scares me. It takes what it takes to get better. For me it's usually 1-2 months, less if I'm lucky, but of course no guarantees. Trying to get doctor's appointment to rule out a few things but he has nothing available in October and his schedule for November hasn't been released for booking yet. I'm supposed to keep checking back on the computer for an appointment. It's this big mystery when the HMO will open schedules and release appointments into booking area. Healthcare system is broken. 

[ShiningLight]

Anyone ever have generalized body swelling from withdrawal? Everything serious has been ruled out by my doctor. I have really obnoxious swelling in my inner thigh/groin area on both sides. Got checked out at the ER. Can't get it to resolve. Trying elevation, compression stockings, low salt diet, no success. Feel like there's a towel in between my legs when I walk. Not like normal chub rub! 😩

[ShiningLight]

Still holding at 87.5 mg.

 

Not doing well at all.

 

Terrified, confused, going through a lot. In a bad situation and I can't seem to find a path through it. As a result, I'm not sleeping well, not eating well, not hydrating well, having trouble taking care of myself in general. This has been worsening for about 3 weeks now.

 

I made a series of lazy and dumb decisions that can have potentially ruinous consequences. At the time, I didn't think much about it, but looking back this was very poor judgment. I'm not sure why I did things this way. I think I just wasn't thinking straight with the withdrawal--this was definitely part of it. And the depression, just not taking a lot of the right steps or being thorough. It has left me in a very sloppy, vulnerable position that I don't know how to extricate myself from.  

 

Would appreciate your prayers, love, and understanding right now

[RachelSusan]

@ShiningLight I just started reading your thread.  I got up to September of 2019 but since I have to leave I decided to answer you now and read the rest later. I don't like doing it this way but you sound like you need a friend now, not later.

 

As a side note, in spite of the torture you went through your personality shines through in all of your writings. Your name Shining Light seems most appropriate. I am glad they fixed your name for you. You said so many things that resonated with me.  I can't wait to go back and finish the rest. I appreciate your emotional honesty and your willingness to let us know the real you.

 

You and I have been reducing from the same drugs, with you unfortunately having a few extra. I did the Zoloft first and I started a Gabapentin taper Spring 2022, but I am holding for now.

 

I am sending all my support. These multiple drug tapers are a long and difficult journey.  You have done a very good job of it.  I am sorry that you are in pain now.  I am writing blindly because I want to read it all in order and haven't gotten up to the present yet. I look forward to reading the rest and getting to know you better.

[ShiningLight]

@RachelSusan thank you so much for your kindness. Your response made me cry. Don't feel rushed reading through my journey, there's a lot of it! 😅

 

Gabapentin is a monster to taper. Holding is always a good strategy, so I'm glad that you're doing that! I will be holding my Zoloft dose for quite some time as I try to chart a path.

 

 

[RachelSusan]

@ShiningLight

I am caught up with your story. So let me see if I got this straight, you went through profound social isolation due to Covid, were forced out of your home, lived a variety of places before you got your present apartment, in 2022 you were still getting waves from the Gabapentin taper, your father was diagnosed with dementia, you lost one of your dogs, and the other dog had a period where he or she had some medical problems, and you had a C. Diff. infection. Wow. Double wow. You have been to H3LL and back. Oh wait,  I forgot that you also mentioned you made some sort of decision that could potentially cause you a great deal of problems.

 

And with all the above you are still standing. You are not doing well but in spite of how terrible you feel you are still managing to work, walk your dog, feed yourself and do whatever you have to do in order to function. Sometimes we don't have it in us to do a good job with life  but but a barely adequate job will just have to suffice until things turn around. If you are doing even the bare minimum I am impressed. You have been through an awful lot.

 

Even though you are holding on the Zoloft taper, it is very much like the Gabapentin in that it is the gift that keeps on giving. Many months after a setback, or even just a cut, a person can have a wave hit them. You are a pro at tapering so there isn't much advice I can give you at this point. I can tell you that I support you, and I have been through it with the Zoloft as well. There is a brighter tomorrow for you, it just takes time to get there.

 

You are a very smart and capable person, sadly you got handed this pile of sh*t to deal with. Sorry about my bluntness, however we both know this is a very unfortunate situation we both find ourselves in (the medications) and we are both trying our best turn our situations around. We got lemons and we are trying to make lemonade.

 

As for whatever else is going on, I am sorry to hear that you have this burden to carry. I hope that it turns out alright for you.

 

If you need to vent at any point I am here on this website and I'm always willing to listen.

Best wishes for better days to come.

 

 

 

 

 

[ShiningLight]

1 hour ago, RachelSusan said:

@ShiningLight

I am caught up with your story. So let me see if I got this straight, you went through profound social isolation due to Covid, were forced out of your home, lived a variety of places before you got your present apartment, in 2022 you were still getting waves from the Gabapentin taper, your father was diagnosed with dementia, you lost one of your dogs, and the other dog had a period where he or she had some medical problems, and you had a C. Diff. infection. Wow. Double wow. You have been to H3LL and back. Oh wait,  I forgot that you also mentioned you made some sort of decision that could potentially cause you a great deal of problems.

 

Many months after a setback, or even just a cut, a person can have a wave hit them.

 

 

 

@RachelSusanwow, thank you for summarizing that! Helped put it into perspective. Yes, that's been a summary of the past year or so. It's been pretty bad. I also had a week long respiratory infection with two months of reactive airway sequelae, finally that's over.

 

And yes, I do believe it's all being complicated by a Zoloft withdrawal wave. Or all the stress caused a wave. Chicken or egg. The point is, it's poultry. For the birds. 🤦‍♀️ 

[RachelSusan]

15 minutes ago, ShiningLight said:

Chicken or egg. The point is, it's poultry. For the birds. 🤦‍♀️ 

There you go with that Shining Light sense of humor. I appreciate it.

 

Also add on to your list that you had to fight hard for your liquid Zoloft  and you changed jobs (two more stressors).

 

I have found, at least for me, that any type of stress can bring on a wave.  Emotional stress certainly, but also body stress such as in illness, lack of sleep, or even working out too hard. So instead of a wave you have a tsunami going on. Just remember, it will pass.  Naturally not soon enough, but it will indeed pass.