Please Pray for Me & Send Good Energy + Hope

[[Wi...]]

Hi! I am sorry you are all going through this. It’s awful. I am not sure if what I have is aka too but I get a load of symptoms that make me miserable. I don’t pace, I don’t seem to have the terror, I get adrenaline surges only once in a while, but I get RLS-like toxic feeling in my muscles that sometimes becomes a toothache-like pain or electric acid in veins burning and this makes me so restless. My CNS feels like it’s buzzing inside and sometimes I feel like I am about to have some sort of attack/jolts. It originates in different spots, sometimes lower back, sometimes upper back and back of head. Very odd. I also get a ton of paresthesias such as stinging, buzzing, burning, itching, crawling and pin pricks. You can check out my previous post where I describe what exactly happens to me. In general my symptoms change and cycle very quickly. One day it’s mostly pain, the next day it’s inner tension, the next paresthesias, etc. I wake up with one set of symptoms that is replaced with other symptoms during the day. What is constant is this tension in the background with a slight vibration. Like I am a faulty wire that sometimes is revved up even more. It feels like I have corn under my skin that is about to start popping. Not full blown aka obviously but really distressing when it gets more intense.

My issues began after Cipro (it f’s up GABA receptors too, similar to benzos) and then trials of some psych meds so my case is not wd but adverse reactions to many meds.

I had a baby almost 3 months ago and I am trying to be a good mother. I had a huge setback from hormonal med right before pregnancy and started getting bad last August and then had to take an antibiotic that set me back even worse (worse than ever). My undoing happened between November and March, then I had a nice window (not 100% but 80-90%) from half April to the end of June but something made me bad again because in July I started feeling off and the last week of July my horrifying wave began. No idea if it was triggered by a delayed reaction to meds used in c-section or something else, maybe I am just that screwed. I am on holiday now and scared and tormented by symptoms. Instead of relaxing and enjoying family time I am just like a deer in the headlights terrified I will just get worse and worse indefinitely.

I hope we can all find relief soon. 

[[Fa...]]

@[Wi...]  I wish for this wave to come to end for you.  It sounds very distressing.  And, I know how fluoroquinolones can injure the NS as benzos do.  Actually, had a medic alert bracelet made stating ‘no Benzodiazepines or Fluoroquinolones’.  And, I’ve taken cipro a couple times in years past.  Didn’t get snared.  Got snared this time.

I often wonder what it would feel like to experience how others are feeling their symptoms because I know we all describe our symptoms, and we have names for them…but, I really think it’s impossible to know how another is experiencing them.  I think we assume that they must be the same in every way…but, I’m not so sure.  Is the intensity the same?  Then you have an individual’s tolerance level.  The worst pain is your own pain because we only know our pain.  Explains why so many of us think we are different…perhaps a worst case.  We can’t imagine that this kind of indescribable pain could be understood by another because we would have never been able to fathom it before we experienced it.

Sending you much healing energy.

Warmly,

F

 

[[So...]]

@[wi...] it seems like we are in a similar pattern with our symptoms.  Mine are much of the same, yesterday was a bit of a break but today is very bad again.  I just have so much internal pressure on my spine & my veins burn a lot.  So much agitation it's unreal, I just want to put my head thru the wall. Depression & hopelessness are a given at times but we have to fight back as best as we can!  With my muscles twisting all day it is really hard to get up & move around but I try, I think the more we can get up & get distracted the better. 

I am so sorry to hear about your living situation, but as faith said, maybe this is just the next step in your recovery?  Perhaps the change of scenery will be nice!  Do you feel safe being alone though?  That would be my only worry but we are always here for ya on here.  I have been tingling & vibrating so much as well, it is highly uncomfortable but I just remember it will not hurt me.  Also, your wound itching means it's healing so don't fret, you're doing great 👍 

So happy for you that the past two days are better!! That's what we like to hear!  My intensity is fluctuating day by day as well.  Today is a 9 for me.  i know my meds got changed but im trying to keep calm becuz i have no new symptoms & this is likely just a bad day, not me getting worse.  Praying extra hard 🙏

 

@[Fa...] oh nooo I am so sorry to hear about your "10" day, i know how bad they are.  Something I was just thinking of though, is when I look back it seems like the time since I have been sick has flown by, but when I'm in the actual day it is sooo slow.  So, I figure when we are all better we will look back & the 10/10 days will seem like a long forgotten chapter of a very thick book.  We just have to get thru the moments & time will add up! 

Yeah I think that you also explain well why we all think we are the "worst case".  Someone said to me that everyone described aka differently, & I think that is very true.  Maybe aka is just our withdrawal but in different interpretations, how our bodies handle the toxicity.  All we can really do to help it along is eat well & sleep as much as possible (easier said than done for most ppl, I know).

 

@[Wi...] I have actually seen you on here & always wanted to tell you how much I admire & look up to you!  I started my journey to getting med free bcuz my husband & I want to have a baby 👶 so i can really relate to you.  

It seems our symptoms manifest in similar ways too, mine are fluctuating day by day as well & also hour by hour at times in intensity.  I also get the toxic feelings in my muscles, all my muscles in my whole body feel locked up & inflamed.  I feel you on the burning in the veins too, have that as well.  No pacing & not always terror either but always super agitated, uncomfortable, & restless.  I know we can beat this tho! 

Sounds like you really got a beating with all the meds & pregnancy, huh?  Are you off everything now?  The fact that you had a two month long window is HUGE, definetly lots of healing progress for you sister! 🙏   you may just be in a wave rn & not even reacting to anything new tbh, thats just the nature of these injuries.  I see people flare up all the time & try to blame it on something they ate or a med change when most likely it is just a flare up & our brain wants a reason for it.  Hold tight, you will make it thru this & you have SO many years to excel as an amazing mama, don't feel like a failure if you can't be 100% rn.  Your baby won't even remember this time anyways!

[[So...]]

Update on my symptoms too, so it seems like my brain & body are just craving to be in a cool, dark room lately, which is highly interesting because I know people with TBIs feel the same.  So I'm giving it what it wants.  Also sleeping a lot, trying to eat really clean, moving more over towards a keto style diet little by little. 

Woke up pretty bad again today but I finally figured out something that relieves my internal pressure a bit, if I lay in the fetal position holding a pillow w my head down & a weighted blanket over me, it sort of distributes pressure to my body in a way that distracts the adverse pressure.  If that makes sense?  So I move into that position anytime I wake up. 

 

Feeling pretty sad about my circumstances, but I can't change them so it's pointless.  This is pretty much on the cusp of a chronic illness at this point, I have been sick almost 8 months straight now and it is very debilitating to my mental health.  I feel like my husband has to be my caretaker & I hate it.  I was so independant before this, had a job since I was 16, put myself thru school, etc.  Now I just mope & cry in pain.  Oh well.  I have taken up knitting so that distracts me a bit.  Leaning on the success stories.  I know this has an end, I have to make it there. 

 

Almost done with all my meds, so that's a freaking relief.  I don't know when Josef will get me completely off bcuz of the blind taper but I know it will be less than 6 months.  I'm just letting him do what he wants.  He told me from his observation, I haven't really gotten much worse no matter what changes he makes to my meds, even after my CT.  it's just been a kind of consistent level of crap.  So, that's encouraging & also not haha, I most likely won't get much worse from getting off the last bit of ADs but I also probably won't get much better.  Just time- & then at least when we're done I don't have to shock my bodies homeostasis anymore.  

 

So, thats my vent of the day.  Have to try to go back to work in a week & half.  Not ready at all, pretty much just doing it to appease my family.  They want me to try one more time before sending in disability papers.  I'm not sure how long I will make it.  I've only held my job down one month out of this whole year & it was hard.  The other option is signing on to be a caretaker for my moms husband as he is disabled, but I'll at least give this art gig one last shot.  Very thankful my company kept my spot but I know I'm one leave of absence away from permanently canned.  Yuck. 

[[Wi...]]

20 minutes ago, [[S...] said:

 

@[Wi...] I have actually seen you on here & always wanted to tell you how much I admire & look up to you!  I started my journey to getting med free bcuz my husband & I want to have a baby 👶 so i can really relate to you.  

It seems our symptoms manifest in similar ways too, mine are fluctuating day by day as well & also hour by hour at times in intensity.  I also get the toxic feelings in my muscles, all my muscles in my whole body feel locked up & inflamed.  I feel you on the burning in the veins too, have that as well.  No pacing & not always terror either but always super agitated, uncomfortable, & restless.  I know we can beat this tho! 

Sounds like you really got a beating with all the meds & pregnancy, huh?  Are you off everything now?  The fact that you had a two month long window is HUGE, definetly lots of healing progress for you sister! 🙏   you may just be in a wave rn & not even reacting to anything new tbh, thats just the nature of these injuries.  I see people flare up all the time & try to blame it on something they ate or a med change when most likely it is just a flare up & our brain wants a reason for it.  Hold tight, you will make it thru this & you have SO many years to excel as an amazing mama, don't feel like a failure if you can't be 100% rn.  Your baby won't even remember this time anyways!

Thanks! I am long off, I wasn’t even on anything other than pregabalin for a long time. I was floxed in 2020 and then in 2021 ended up in pregabalin wd and had adverse reactions to cymbalta. And then I had the mildest aka possible (literally just a weird urge to stretch arms plus inner shaking anxiety sometimes) and I was healing well. In August I took a hormonal med to induce ovulation and it f’d me up. Aka that had almost been gone (felt 95% ok and had minor waves every two weeks) got worse and then shit hit the fan and it started developing. Plus in November I took fosfomycin and it made me even worse. I am intolerant to drugs. I had no reaction to drugs used in my c-section but not sure if this wave may have something to do with them, my CNS is odd and often reacts with a delay it seems. It’s so scary. What worries me is that this wave gave me new symptoms, honestly it makes me soooo scared.

 

I hope you will heal quickly to start family. When I reacted to the hormonal drug I hoped for the very first time not to be pregnant after almost a year of trying. But there I was with a positive test. Of course I don’t regret it but had I known that hormonal drugs could f me up, I wouldn’t have touched them. 
 

I had a horrible night being jolted awake in fear an hour after I fell asleep, that hadn’t happened for a long time, I tend to sleep well. Today my day began with general tension and this burning tension developed in my butt, it was focusing in lower body but not only. My legs buzzed like bees were in them. I felt bad but decided to go for a walk with my baby and then the burning subsided (like my lower body is ok now) but it was replaced with more inner vibrations and tingly upper body. My biceps are very tight and buzzing and prickly. Also my head seems to be buzzing and I get pressure. When this happens I feel really overstimulated. Sometimes when tension is high I get these weird jolts in my head, it’s not dizziness but feels like something is happening there and it makes me feel scared. I feel this night will be uneasy too. 

I am pissed that I am not soaking in all these baby moments like I could but I still try to connect with my baby as much as I can. 

 

 

[[Fa...]]

15 hours ago, [[S...] said:

Update on my symptoms too, so it seems like my brain & body are just craving to be in a cool, dark room lately, which is highly interesting because I know people with TBIs feel the same.  So I'm giving it what it wants.  Also sleeping a lot, trying to eat really clean, moving more over towards a keto style diet little by little. 

Woke up pretty bad again today but I finally figured out something that relieves my internal pressure a bit, if I lay in the fetal position holding a pillow w my head down & a weighted blanket over me, it sort of distributes pressure to my body in a way that distracts the adverse pressure.  If that makes sense?  So I move into that position anytime I wake up. 

Feeling pretty sad about my circumstances, but I can't change them so it's pointless.  This is pretty much on the cusp of a chronic illness at this point, I have been sick almost 8 months straight now and it is very debilitating to my mental health.  I feel like my husband has to be my caretaker & I hate it.  I was so independant before this, had a job since I was 16, put myself thru school, etc.  Now I just mope & cry in pain.  Oh well.  I have taken up knitting so that distracts me a bit.  Leaning on the success stories.  I know this has an end, I have to make it there. 

Almost done with all my meds, so that's a freaking relief.  I don't know when Josef will get me completely off bcuz of the blind taper but I know it will be less than 6 months.  I'm just letting him do what he wants.  He told me from his observation, I haven't really gotten much worse no matter what changes he makes to my meds, even after my CT.  it's just been a kind of consistent level of crap.  So, that's encouraging & also not haha, I most likely won't get much worse from getting off the last bit of ADs but I also probably won't get much better.  Just time- & then at least when we're done I don't have to shock my bodies homeostasis anymore.  

So, thats my vent of the day.  Have to try to go back to work in a week & half.  Not ready at all, pretty much just doing it to appease my family.  They want me to try one more time before sending in disability papers.  I'm not sure how long I will make it.  I've only held my job down one month out of this whole year & it was hard.  The other option is signing on to be a caretaker for my moms husband as he is disabled, but I'll at least give this art gig one last shot.  Very thankful my company kept my spot but I know I'm one leave of absence away from permanently canned.  Yuck. 

I understand about wanting to try to get back to your work again.  Just be very gentle with yourself, and if you cannot do it, you will need to know that it’s okay.  It is a tall order, but some say that continuing to work gave them the distraction they needed, and as hard as it was, they were glad they did it.  Having said that, many simply cannot work.  So, whichever way this goes, listen to your body and no there is no failure…what you are moving through is a job unto itself.  It’s huge.  Please don’t push yourself so hard that you aggravate your already injured NS.  See how it goes, that’s all you can do.

Being a caregiver when you are in need of care is very difficult.  I am in that position.  I required help which is why I am where I am now…with my daughter.  Think carefully about that option.  I’m not with you there to see you as you are moving through this…you are much like me in that you are still able to express yourself well when you write…but, my feelings are that you need to care for yourself right now only…if that is an option.  Sometimes people don’t have that luxury…especially with little ones.  But, caring for another while not well yourself takes a toll…physically, mentally and emotionally.  And, you need your reserves.  But, I do not know the extent of the care your mother’s husband requires.  So, I may be talking out of turn.

Your are strong.  You will know what is best for you as you move forward.  If anything falls away, there will be a reason for it.  Trust the process. Thank you for your update.  You are doing so well, Soapy.

Much Love,

F

[[wi...]]

22 hours ago, [[W...] said:

I get a load of symptoms that make me miserable. I don’t pace, I don’t seem to have the terror, I get adrenaline surges only once in a while, but I get RLS-like toxic feeling in my muscles that sometimes becomes a toothache-like pain or electric acid in veins burning and this makes me so restless. My CNS feels like it’s buzzing inside and sometimes I feel like I am about to have some sort of attack/jolts. It originates in different spots, sometimes lower back, sometimes upper back and back of head. Very odd. I also get a ton of paresthesias such as stinging, buzzing, burning, itching, crawling and pin pricks. You can check out my previous post where I describe what exactly happens to me. In general my symptoms change and cycle very quickly. One day it’s mostly pain, the next day it’s inner tension, the next paresthesias, etc. I wake up with one set of symptoms that is replaced with other symptoms during the day. What is constant is this tension in the background with a slight vibration. Like I am a faulty wire that sometimes is revved up even more. It feels like I have corn under my skin that is about to start popping. Not full blown aka obviously but really distressing when it gets more intense.

It is exactly the same for me.. You described it very well.  The only comforting thing is that we know we don't have some mysterious disease. The myriad of odd symptoms is from the nervous system being disrupted from the meds.  The CNS is resetting itself.  I am so sorry you are suffering.  I'm sure you are doing better than you know being a mom to that precious baby.   

You are in my thoughts and prayers.

[[Fa...]]

Thank you everyone for always being so compassionate, supportive and loving to each other while moving through your own suffering.  We have each other, and while we may have support around us (many do not), we need those who understand because they are walking the unspeakable path with us.

Words cannot express my gratitude.

We will have our freedom back.

Much Love to You All,

Faith ❤️

[[wi...]]

Thank God we have one another.  It's really been getting me through right now.  Stress has been ramping up my symptoms.  I'm so agitated and I've been experiencing the chest pounding, shortness of breath and terror non-stop this morning. Internal panic everywhere..

I've been screaming into a pillow.  This BWD is cruel, I tell ya, cruel!

[[Fa...]]

Just now, [[w...] said:

Thank God we have one another.  It's really been getting me through right now.  Stress has been ramping up my symptoms.  I'm so agitated and I've been experiencing the chest pounding and terror non-stop this morning.

I've been screaming into a pillow.  This BWD is cruel, I tell ya, cruel!

It’s the beast.

❤️

[[ji...]]

You guys are constantly in my prayers.    We will get through this although at times it doesn't feel like it.    I had that kind of day yesterday....felt like I'll never get better and began to despair a bit.

God bless each of you.

Jim

[[Fa...]]

[[So...]]

Thank you so much everybody ❤️ having a 10/10 day so I will respond more later. I love you all & you are all in my prayers, we WILL beat this!!

[[Si...]]

how is everyone today?

[[Fa...]]

@[Si...]  Hi Simona,

So glad you are here!

Today…sitting in mental AKA, DP/DR, terror and the rest…we’ve been rating ourselves out of 10…10 being our worst.  Today, so far, is a 9 for me.  I’m one of the few who are still tapering on this thread.  So, I’m distracting, distracting, distracting.  It’s the only thing that alleviates the horror show taking place inside of me…mostly in my head.  Can hardly wait to come on here and report a score under 5!

How are you making out today?  How are things the more days you get behind you?

Warmly,

F

[[Si...]]

so sorry faith.  

what is mental aka?

I am in terror too but less than usual.  have been hoping things could go linear and then torturing myself googling linear benzo buddies, to see that hardly ever happens.  

no screaming, no rocking, one teeny 1 minute walk and some word games..

I'll pray for your 5s and below..

[[Wi...]]

For me it’s not as bad today but I am still symptomatic. In the motioning it was toxic burning under the skin and heavy pain. Then it went away and was replaced with something else. Last week I started getting weird squeezing in my mid section and solar plexus. Feels like someone is hugging me. Fortunately, as all other symptoms, it seems to be coming and going but it’s scary. It doesn’t really come with anxiety or anything but feels off anyway. Like physical tension. I try doing meditation and calming myself when I can. I am not as bad as some here but still struggling and unsure what is going on and how it will develop. Hugs to everyone! May this shitshow end soon. I hope there is improvement for all of us right behind the corner. 

[[Es...]]

 

Constant hot flushes, depressed and cannot eat. Haven't eaten since three days, I think. I'm not used to revealing how I feel. I was taught to never say how I feel.

Trying to do chores around the house. Keeping everyone here in my thoughts. I have nowhere to go, so may just as well hang around here.

Hot flushes are the worst. This feeling of extreme heat in my face, although my face is not red and AC is on.

I understand this is a thread about suffering. Cannot remember having suffered so much. Trying to do stuff around the house, it's rewarding. Drinking water. Cannot force down food.

Thanks for listening.

 

[[Fa...]]

6 minutes ago, [[S...] said:

so sorry faith.  

what is mental aka?

I am in terror too but less than usual.  have been hoping things could go linear and then torturing myself googling linear benzo buddies, to see that hardly ever happens.  

no screaming, no rocking, one teeny 1 minute walk and some word games..

I'll pray for your 5s and below..

Thank you. Simona.  I will pray for you, as well. ❤️

For me, mental AKA is like living in a twisted and distorted reality.  It feels like being in an alternate dimension.  I call it ‘the upside down’…like in Stranger Things.  It’s my ‘signature’ symptom…so far.  To me, it feeds the DP/DR…or, maybe it works the other way around.  I don’t really know.  Don’t really know a lot…just know it’s ‘wrong’.  Feels so wrong.

I’m so glad to hear that the screaming and rocking has subsided.  And, no…not linear.  I know…it feels scary to accept that.  But, although it goes up and down, back and forth, around and around, if you zoomed out and plotted it, there is still an upward trajectory…but, with loops and corkscrews within it.  It sucks.  Period.  We know it more than sucks…but, can’t use the words I would want to.  So, we gotta keep connecting to remind each other, or to normalize this insanity, so we don’t feel like an island unto ourselves quite so much.

 

[[Fa...]]

7 minutes ago, [[E...] said:

Constant hot flushes, depressed and cannot eat. Haven't eaten since three days, I think. I'm not used to revealing how I feel. I was taught to never say how I feel.

Trying to do chores around the house. Keeping everyone here in my thoughts. I have nowhere to go, so may just as well hang around here.

Hot flushes are the worst. This feeling of extreme heat in my face, although my face is not red and AC is on.

I understand this is a thread about suffering. Cannot remember having suffered so much. Trying to do stuff around the house, it's rewarding. Drinking water. Cannot force down food.

Thanks for listening.

Hi Estee,

When you say you cannot eat, is it appetite, or is your GI rejecting food?

I understand about not sharing how you feel.  I cannot share how I am feeling verbally because it is too intense, and I will bring on a panic attack/wave…whatever you want to call it.  But, I can express what I feel in writing.  And, I think that if we can do that, which is healthy and not to be hidden away out of shame, it will help us…and, what we share can help others when they read it in case they are experiencing it, also.  It validates that it is ‘normal’, and may alleviate some panic and anxiety about it.  Just my thoughts about it.

I have not experienced flushing on my face.  I experience numbing.  Does putting an ice pack on your face bring any kind of relief?  Does anything bring any relief for you?

Ya…suffering is expressed…and, encouragement, validation and support.  ❤️

[[Es...]]

@[Fa...]

I already deleted that message, cause I was ashamed of myself and thought no one would respond.

I have anorexia on top of BZD WD. When there are stressful emotional events, I just stop eating. 

You are right, it's so difficult to put suffering into words.

These hot flushes are some kind of panick attacks, reinforced by perimenopause. I have PMDD. 

I mean staying without food for such a long time does give me some kind of strange energy, could be ketosis.

I must take care of my 12 yrs old Kitty and there is no one to take care of me here, so I cannot just lay in bed.

Kitty is like my child, the reason I keep going...

I have ice packs, right now I manage with the AC. The energy is leaving my body cause of lack of food. Yet I cannot eat... I know it affects the brain.

My worst hot flushes are after eating - sense of guilt. I don't deserve... Sorry, it made me cry. Love you guys. We're in this together.

[[Fa...]]

6 minutes ago, [[E...] said:

@[Fa...]

I already deleted that message, cause I was ashamed of myself and thought no one would respond.

I have anorexia on top of BZD WD. When there are stressful emotional events, I just stop eating. 

You are right, it's so difficult to put suffering into words.

These hot flushes are some kind of panick attacks, reinforced by perimenopause. I have PMDD. 

I mean staying without food for such a long time does give me some kind of strange energy, could be ketosis.

I must take care of my 12 yrs old Kitty and there is no one to take care of me here, so I cannot just lay in bed.

Kitty is like my child, the reason I keep going...

I have ice packs, right now I manage with the AC. The energy is leaving my body cause of lack of food. Yet I cannot eat... I know it affects the brain.

My worst hot flushes are after eating - sense of guilt. I don't deserve... Sorry, it made me cry. Love you guys. We're in this together.

Please don’t feel that you need to delete your posts.  We have all expressed things we feel uncomfortable posting.  It can feel like we’re naked standing on a stage for all to see us.  I would encourage you to try to push through if you can.  If its too much, I understand.

I’m glad you have your cat with you.  I’m glad kitty keeps you going…that is so important to have a reason to push ahead.

The guilt and shame we feel in BW is brutal.  And, if it is something you struggled with pre-benzo, it just gets so amplified.  Nothing to feel guilt and shame about…I know that is easier said than done.  But, it’s truth.

I cry a lot.  Definitely cry often as I as am writing. I do hope you can try to get some food in your body.  I won’t pretend to know what anorexia is like…and, I do hope that it is something that you will recover from along with the BW.  We all have our ‘stuff’…our traumas.  They manifest in different ways.  I send you much love and healing, Estee.  ❤️  Thank you for posting again.

 

[[So...]]

Hey guys, so glad to see you guys have hopped on the thread! @[Es...] @[Si...]  I am so sorry that you two are suffering as well, this is inhumane & no one should have to go thru it but we WILL make it thru & have a new lease on life.  I fully believe this will all be worth it!

 

So an update on me.  I'm pretty sure the SSRIs got decreased significantly.  I am having brain zaps & the feeling of falling while laying down.  Also there is way less aka today but way more of SEVERE DPDR.  I have had DPDR for 7 years from another condition not related to benzos so believe me when I say it is bad as this symptom usually doesn't bother me.  Feeling like I will lose control any minute, things feel bigger or smaller, everything including myself is vague & unfamiliar.  My aka was terrible yesterday, I felt the need to rip out my spine, but knock on wood it's so far so good today in that department.  This also happened in my last mirt withdrawal attempt but I am severely itchy over my whole body BAD.  Also, on top of everything else I have had an impacted wisdom tooth for years now.  Well, it finally broke thru & this tooth is WAY too big for my mouth.  I really don't want dental work right now so I'm going to try & just live w it for awhile.  I took way more opiates than I should have this week & feeling bad about it, I will have to take a break now.  The aka was just so bad & thats the only thing that will stop it, but I know in the long run I am potentially making it worse.

 

@[Si...] ahh I am so happy to hear you are not rocking & feeling a bit better!  That's HUGE.  I'm so happy that you stuck it out & continued!  Don't get scared or discouraged if that starts to come & go in waves but I'd say you are well on your way to healing w that kind of improvement!

 

@[Es...] I am so sorry to hear about your anorexia condition but I pray you will find some way to keep some food down as I believe food is very important to healing.  Have you found any tips or tricks to help w the anorexia in the past?  Also, please don't feel embarrassed or ashamed of anything you write on here.  Trust me, we are all going thru hell & none of it is surprising or embarrassing.  We are all like open nerves just exposed during this process.  Sharing is the one thing that really helps me, it is cathartic, so please don't rob yourself of that.

 

@[Fa...] sounds like we are both in a nasty dpdr wave.  I am so sorry to hear about your 9/10 day but it's an improvement from the 10/10 at least?  When this happens to me I just try to stay as grounded as possible & stay around healthy supportive people to bring me back to reality.  I also agree with your advice to not take on a caretaking role right now.  I can not even take care of myself.  My stepfather would not be hard to take care of but it is still too much for me right now.

 

@[wi...] wide, how you holding up?  

[[Ma...]]

Hi, my fellow sufferers. I can concur with most everything said here: I have a serious dental issue I cannot attend to, am forcing self to eat as am wasting away-my legs look like tooth picks and have lost all muscle mass; like Faith I feel like I am living in a parallel universe to everyone else in this world who live so freely and effortlessly. I would give just about ANYTHING to experience that.

 I’m pretty much bedridden but force self to walk to store and dogs around the block each day.

The kicker is up until just recently I was able to read books every day, research what was happening yet, now? Daily I just deteriorate and it’s terrifying.

Don’t know what to do…just don’t know what to do to move forward 🥺❤️‍🩹

[[Fa...]]

 

@[So...] Yes, it sounds like you had a decent decrease in your ADs.  The brain zaps sound like a giveaway.  You are one strong woman, Soapy.  Determined and courageous with such fortitude.    

'Feeling like I will lose control any minute, things feel bigger or smaller, everything including myself is vague & unfamiliar.' 

YES, my DP/DR is bad, too...I think it's been creeping up on me for days now.  Probably since my last two reductions.  I sit outside, and my car looks HUGE.  I walk, and I feel 15' tall.  It's scary...and, mixed with the mental AKA...it's a bad, bad trip.  You explain it so well.

During my worst AKA episodes, I used to envision the movie 'Predator'...you know how he would rip the spinal columns out...'cause that is what I felt like doing.  I totally understand.

I've never had a brain zap before...always a first I guess.  What does it feel like?  I have not experienced feeling as though you are falling while laying down, either.  Again...lots of time to still experience that, too.

I did the cut 3 days ago...but, I only did 4% not 5%.  But, symptoms more intense along with new ones.  Think I'll be hanging in the upper numbers for a bit (rating)...in the 'nose bleed' section.

No feeling bad about doing what you feel you need to in order to get through this process...which has been intense.  You know your breaking point...what you can tolerate.  I saw the YouTube video of Dr. Doerring discussing his use of morphine for severe AKA cases.  You are fortunate you have access to it.

I always look forward to hearing your updates.  Thank you, Soapy. 

@[Ma...] How are your toes, Mary?  Are you able to walk okay now?

Don't hate me for this because I want to slap myself for saying it too...but, sometimes we have to stay still to move forward.  And, sometimes things move backwards in order to take a jump forward...like a sling shot.  I know this blows...but, seems to be truth. 

You're gonna make it through the other side, Mary.  You WILL!