Short term benzo users

[Guest [fl...]]

Bess55, thank you, you are so sweet 

[[Be...]]

Shorties,

 

Just checking in as I've been loath to do so when things have been so up and down--I really don't know where I stand. `I think I am emerging from this wave?  I had that night of 7 hours straight (it was glorious) and then the next day had my second Covid vaccine.  My broken sleep unfortunately returned and I had a small uptick of some DR and brain stuff along with the pretty standard sore arm, headache, some muscle and joint pain (all vaccine related) that added to my already rollercoaster ride of back muscle issues.  I'm back to the new baseline now and fully vaccinated. 

 

The past two nights my sleep has come back with only maybe one wake but I go right back to sleep.  It's been around 7 hours again as well these past couple nights--which I am again absolutely THRILLED about.  I can tell that getting the longer stretches has improved my mood and ability to handle the physical stuff.  I've started walking again, but it feels like baby steps again.  I long to exercise like I was before because that felt like real progress to me. 

 

I can tell things are "loosening" up some, hence why I think I am finally really emerging from the hit of this new baseline.  Crossing my fingers.  Everything feels low grade now the past couple days, like my back/muscular stuff, the feeling of dyspnea, the cog fog/mild DR, the paresthesia and burning sensations.  It's here all the time now, but it feels in the background for the most part, sometimes coming forward enough to put me on edge, then easing back again where it's manageable or just a faint presence.  A couple symptoms have revisited again too, namely ear pressure with some sharp pains and an ache in my jaw along with some other "weird" pains or sensations that will pop in quick, but these don't bother me much.  Mentally I feel pretty solid, just the still trying to accept all this and feeling angry that I'm still in the marathon. 

 

Another very short-time user posted his 3 year milestone (RKO) and his story resonated so much.  Unfortunately he is not fully healed and his big hurdle is the exercise intolerance.  Boy did that hit home right now.  I know not to compare, but I empathize with his experience, particularly of being blindsided so quickly. 

 

Anyways, I hope you are all well, feeling comparatively better or seeing improvements, no matter how small.  I'm going to try and enjoy the moments I can and do my best to tamp down the benzo lies in my head and body.  That voice is the worst, you know the one. 

 

Sending on my love and hugs.

 

Hey Sunshine,

 

I’m glad your sleep is better.  I hope you are doing ok & being kind to yourself.  It’s super hard not to compare yourself to anyone. But you really can’t compare as your cr teal nervous system is tiramisu individual & different to everyone else’s.  Just because someone else had a certain experience doesn’t mean you will,  You are healing & you will heal.  Xxx

[[Be...]]

Bess55, thank you, you are so sweet 

 

Pleasure! Just do what is right for you & go with your gut feeling,  it’s going to be ok. You will heal.  We are all different - as you know out central nervous systems are all so very different & what works for one person may not work for smother,  for mr diet is super important,  so is having no stress - which there is an art to it.  Hold onto hope tightly & know that when you are in the depths of a horrible wave you will come out the other side.  We are all here for you xxx

[[su...]]

Hi shorties, I am having a crisis of my own. It's a weird one, and I just don't know who to turn to for advice.

 

I started Lyrica out of desperation. The mental symptoms were too much, and I couldn't function. It has helped me so much, but now I am terrified of another withdrawal and PAWs. I kept the dose as low as I could (12.5mg three times a day) and will try to stabilize over 2-4 weeks then do a microtaper. It's hard because the longer I'm on it, the more concerning, but the faster I taper, the more brain trauma.

 

I am so grateful, yet so scared. I just wanted my brain to heal on its own, but I wasn't getting anywhere. Now I am, but it feels like it's on a high interest loan.

 

If anyone has thoughts or knows someone I could ask, let me know!

 

I'm glad you are improving sunshine!

 

Fluffernutter, oh my dear.  I have not come across anything or anyone whom I think might be of help, but I would imagine someone here on the boards would have some insights with Lyrica. 

 

Please let your rational brain make the decision though.  Not the emotional or fear driven brain (easier said than done, I know, because our rational brain is being hijacked by that primal flight or fright brain during our healing).  You made the choice to take it because of your concern for your well being, and rightfully so.  It’s that balancing act, sometimes we have to make decisions and choose things we normally wouldn’t so as to keep us here.  The good thing is you knew about the risks or issues with Lyrica before commencing.  You were informed (unlike with our benzo fiascos).  So, it did it’s job and while it MAY come with consequences, it also MAY NOT.  Regardless, it kept you here, it did what it needed to and what you wanted it to do.  That is the priority, right!?  Absolutely.

 

Now you have to come up with a new plan, one that you control, just like your decision to start it.  You kept your dose low and it sounds like you already have your plan in place.  The micro taper sounds perfectly reasonable along with holding before commencing.  What I don’t think you should focus on is this fear of another withdrawal or of PAWS.  You can only control what you can control.  Your plan is your control.  Your decision is your control.  What happens beyond that is out of your control.  You’re smart and you have a good sense of what you can and cannot handle.  Just make sure that fear is not driving the boat (advice I wish I had followed). 

 

Sending you hugs and am so very happy the Lyrica has helped you.  Now, create your plan and be as informed as you can.  You got this.  And EVERYTHING Bess said! 

[[su...]]

Shorties,

 

Just checking in as I've been loath to do so when things have been so up and down--I really don't know where I stand. `I think I am emerging from this wave?  I had that night of 7 hours straight (it was glorious) and then the next day had my second Covid vaccine.  My broken sleep unfortunately returned and I had a small uptick of some DR and brain stuff along with the pretty standard sore arm, headache, some muscle and joint pain (all vaccine related) that added to my already rollercoaster ride of back muscle issues.  I'm back to the new baseline now and fully vaccinated. 

 

The past two nights my sleep has come back with only maybe one wake but I go right back to sleep.  It's been around 7 hours again as well these past couple nights--which I am again absolutely THRILLED about.  I can tell that getting the longer stretches has improved my mood and ability to handle the physical stuff.  I've started walking again, but it feels like baby steps again.  I long to exercise like I was before because that felt like real progress to me. 

 

I can tell things are "loosening" up some, hence why I think I am finally really emerging from the hit of this new baseline.  Crossing my fingers.  Everything feels low grade now the past couple days, like my back/muscular stuff, the feeling of dyspnea, the cog fog/mild DR, the paresthesia and burning sensations.  It's here all the time now, but it feels in the background for the most part, sometimes coming forward enough to put me on edge, then easing back again where it's manageable or just a faint presence.  A couple symptoms have revisited again too, namely ear pressure with some sharp pains and an ache in my jaw along with some other "weird" pains or sensations that will pop in quick, but these don't bother me much.  Mentally I feel pretty solid, just the still trying to accept all this and feeling angry that I'm still in the marathon. 

 

Another very short-time user posted his 3 year milestone (RKO) and his story resonated so much.  Unfortunately he is not fully healed and his big hurdle is the exercise intolerance.  Boy did that hit home right now.  I know not to compare, but I empathize with his experience, particularly of being blindsided so quickly. 

 

Anyways, I hope you are all well, feeling comparatively better or seeing improvements, no matter how small.  I'm going to try and enjoy the moments I can and do my best to tamp down the benzo lies in my head and body.  That voice is the worst, you know the one. 

 

Sending on my love and hugs.

 

Hey Sunshine,

 

I’m glad your sleep is better.  I hope you are doing ok & being kind to yourself.  It’s super hard not to compare yourself to anyone. But you really can’t compare as your cr teal nervous system is tiramisu individual & different to everyone else’s.  Just because someone else had a certain experience doesn’t mean you will,  You are healing & you will heal.  Xxx

 

Oh, Bess, I know this in my heart of hearts, and always make sure to note my understanding of not to compare, but as human beings we relate through one another’s experiences and journeys so it’s difficult not to do it.  I swear I do my best not to get sucked down the rabbit hole of comparisons. 

 

Lately I keep saying I will get there when I get there.  The timelines HAVE NOT been helpful for me because I am a goal oriented person to begin with.  Seeing those milestones go by, especially after being led to believe my healing should be fast given my very short run, was devastating, like I was failing.  Then hitting that acute wave out of nowhere and a new baseline really messed with me.  I know I cannot keep going with my normal mindset.  I just can’t because it’s not compatible.  I will likely still mark certain spots along the way, just to be helpful for others, but for me, I can’t affix dates or a timeline with this. 

 

I may feel differently later, but this is where I am now.  I hope you are doing better Bess.  We need to just be done with this mess.  That is a goalpost I can’t wait for. 

[Guest [fl...]]

Thank you sunshine for your wisdom 

[[Be...]]

Shorties,

 

Just checking in as I've been loath to do so when things have been so up and down--I really don't know where I stand. `I think I am emerging from this wave?  I had that night of 7 hours straight (it was glorious) and then the next day had my second Covid vaccine.  My broken sleep unfortunately returned and I had a small uptick of some DR and brain stuff along with the pretty standard sore arm, headache, some muscle and joint pain (all vaccine related) that added to my already rollercoaster ride of back muscle issues.  I'm back to the new baseline now and fully vaccinated. 

 

The past two nights my sleep has come back with only maybe one wake but I go right back to sleep.  It's been around 7 hours again as well these past couple nights--which I am again absolutely THRILLED about.  I can tell that getting the longer stretches has improved my mood and ability to handle the physical stuff.  I've started walking again, but it feels like baby steps again.  I long to exercise like I was before because that felt like real progress to me. 

 

I can tell things are "loosening" up some, hence why I think I am finally really emerging from the hit of this new baseline.  Crossing my fingers.  Everything feels low grade now the past couple days, like my back/muscular stuff, the feeling of dyspnea, the cog fog/mild DR, the paresthesia and burning sensations.  It's here all the time now, but it feels in the background for the most part, sometimes coming forward enough to put me on edge, then easing back again where it's manageable or just a faint presence.  A couple symptoms have revisited again too, namely ear pressure with some sharp pains and an ache in my jaw along with some other "weird" pains or sensations that will pop in quick, but these don't bother me much.  Mentally I feel pretty solid, just the still trying to accept all this and feeling angry that I'm still in the marathon. 

 

Another very short-time user posted his 3 year milestone (RKO) and his story resonated so much.  Unfortunately he is not fully healed and his big hurdle is the exercise intolerance.  Boy did that hit home right now.  I know not to compare, but I empathize with his experience, particularly of being blindsided so quickly. 

 

Anyways, I hope you are all well, feeling comparatively better or seeing improvements, no matter how small.  I'm going to try and enjoy the moments I can and do my best to tamp down the benzo lies in my head and body.  That voice is the worst, you know the one. 

 

Sending on my love and hugs.

 

Hey Sunshine,

 

I’m glad your sleep is better.  I hope you are doing ok & being kind to yourself.  It’s super hard not to compare yourself to anyone. But you really can’t compare as your cr teal nervous system is tiramisu individual & different to everyone else’s.  Just because someone else had a certain experience doesn’t mean you will,  You are healing & you will heal.  Xxx

 

Oh, Bess, I know this in my heart of hearts, and always make sure to note my understanding of not to compare, but as human beings we relate through one another’s experiences and journeys so it’s difficult not to do it.  I swear I do my best not to get sucked down the rabbit hole of comparisons. 

 

Lately I keep saying I will get there when I get there.  The timelines HAVE NOT been helpful for me because I am a goal oriented person to begin with.  Seeing those milestones go by, especially after being led to believe my healing should be fast given my very short run, was devastating, like I was failing.  Then hitting that acute wave out of nowhere and a new baseline really messed with me.  I know I cannot keep going with my normal mindset.  I just can’t because it’s not compatible.  I will likely still mark certain spots along the way, just to be helpful for others, but for me, I can’t affix dates or a timeline with this. 

 

I may feel differently later, but this is where I am now.  I hope you are doing better Bess.  We need to just be done with this mess.  That is a goalpost I can’t wait for. 

 

I totally understand this.  Trust me - I do. I’m a goal orientated person too. I try not to compare & I get scared to death when reading some other stories.  Just before I did & I was like “ oh god, please don’t let that happen to me” I’m not religious at all but during BWD I beg/plead & grovel to any god who will listen. Literally. 

 

I’m doing ok thanks lovely. Last week I had 3 mornings where I didn’t wake up with the terror/panic/anxiety. It was heaven.

 

Hold onto hope lovely. With all your might.  You will heal. I promise. Just hold on xx

[[...]]

Please note that I really don’t want to scare anyone here. It’s a shitty situation that I got myself into. I’ve always tapered psych meds properly but those were antidepressants that I was on for months or years under and under a GP’s guidance. I tapered off those without issue using their advice. I didn’t know what a benzo was or that it affected GABA, etc. I especially didn’t know you could become physically dependent within days. I wasn’t given any warning other than it being “addictive”, but I thought that meant craving it. I was not warned about anything else. It blindsided me like many here. When I got heart palps on the sixth night because I was talking .5mg one day and .25 another I was stunned.  I also had no clue how potent klonopin was. My older GP called it a “weaker form of Xanax” which is obviously false.

 

So when my GP said to stop taking the original script where I cut my dosage in half as a precaution I foolishly listened. Even though my BP was through the roof and I was hysterically crying. But I have always trusted doctors. I was calling my cousin who’s a doctor, going to pharmacists, all saying I could quit without issue and that any sides would be short lived. I just thought I would suffer for a month or two. I didn’t realize I would obliterate my CNS. I didn’t think I would need to go from .5mg to .497mg, .495mg, etc. it didn’t make sense but I must have had a very sensitive CNS. For example, five years ago an edible gave me a massive panic attack while my friends were fine.

 

Bear in mind I was also taking a steroid taper pack simultaneously with the benzo to clear out the ear blockage. Both of those meds were started on the same day. I read that benzos and steroids are cross tolerant but I don’t know what that means.

 

I had prior use of a benzo but it was as needed and never taken consecutive days. This could have caused kindling for what happened to me in 2018 but I don’t know.

 

At any rate, I got screwed and it sucks. I’ve improved immensely since that time. It’s really this physical exertion issue that’s my last major issue. I think working out during acute did something but who knows. I can’t make sense of it but as a father of two young kids and being afraid to pickup your five year old in fear of a setback makes me so upset. I am fearful of never being able to play golf again or play basketball  or go skiing with my family. all because I needed sleep for one week because of tinnitus that went away. This is all my stupid fault.

[Guest [fl...]]

RKO, I understand and feel very similar. I was taking a benzo twice a week for sleep. Due to being a slow metabolizer, I got interdose withdrawal that was true horror, thought I was mentally ill, was misdiagnosed and prescribed an AD and more benzos, Only I, not my doctor, figured it all out. In horror, I quit cold turkey, no clue. Such regret...

 

I live with the horror of the experience, being non-functional, two kids, no Christmas, ruined birthdays, just unbelievable. So much regret, so much self-blame.

 

But this doesn't help us. It sucks beyond belief, there's no way around it. These drugs should be illegal.

 

I truly believe that you will recover. Sending healing hugs your way.

[[...]]

RKO, I understand and feel very similar. I was taking a benzo twice a week for sleep. Due to being a slow metabolizer, I got interdose withdrawal that was true horror, thought I was mentally ill, was misdiagnosed and prescribed an AD and more benzos, Only I, not my doctor, figured it all out. In horror, I quit cold turkey, no clue. Such regret...

 

I live with the horror of the experience, being non-functional, two kids, no Christmas, ruined birthdays, just unbelievable. So much regret, so much self-blame.

 

But this doesn't help us. It sucks beyond belief, there's no way around it. These drugs should be illegal.

 

I truly believe that you will recover. Sending healing hugs your way.

 

I can relate to all of this except I knew what was happening but didn’t get the help I needed. Cutting the dose in half proactively on my own was a precautionary move but the symptoms were intense. Then I goto my GP who wasn’t going to give me any more pills and I had to basically beg for six more. I mean,  that’s still a CT. The original supply was 14 tabs from an ENT with zero refills. There isn’t an hour that goes by where I don’t regret tapering. Early on I would shout “all I had to do was taper” to the point where I shredded my vocal chords.  But again, I didn’t have a proper supply to taper from. The doctors I saw were clueless and didn’t believe me. A psych that specializes in benzo tapering I saw a month later and paid a lot of money for just wanted to give me an antidepressant!

 

But I have made progress. It’s just been painfully slow but it’s hard to look back because it was so traumatizing. You will get there too.

 

 

[[su...]]

 

I had prior use of a benzo but it was as needed and never taken consecutive days. This could have caused kindling for what happened to me in 2018 but I don’t know.

 

RKO, I think there is something to this prior non consecutive use, at least for a few of us who seem particularly sensitive.  I know from posts here and various positions elsewhere that the kindling phenomenon is contested (no definitive studies, of course), but there seems to be something about priming the pump, if you will.  Who knows, but for us unlucky souls it sure didn’t take much to unleash this hell.  It’s one of the things that bothers me most about current advocacy guidance for the medical community that somehow it’s still okay to prescribe as long as it’s less than two weeks.  I was in the ER within less than 2 weeks because of a benzo.  I knew something was up way before that too, but my Dr assured me it wasn’t the benzo.  I wish to god I hadn’t listened to him and started up again after stopping after the third day.  Even better, had trusted my gut to not take it in the first place (but again, he assured me that he prescribed it to little old ladies all the time so I was safe—he also said, “you don’t have an addictive personality.” UGH!).  There is just so much wrong with the prescribing practices, the myths and false perceptions that this is just a mild sedative, and the lack of knowledge about how quickly harm can happen.  If only…

 

I do not think this is all your fault, RKO.  None of this is our fault.  Do you really think if proper informed consent were offered we would still be here, that we would have willingly taken a pill knowing we might be in this current situation?  Even if we would have (which I doubt), we were still let down because we were not listened to.  Our symptoms and reactions were blown off as not possible or not related to the drug.  We were left hanging.  I was so ill and non functioning my husband had to come with to an appointment after my ER visit where we were trying to get help on how to get off, how to taper down and my former Dr said he didn’t know how to help me, that what I was experiencing wasn’t possible, that I should be taking more of the drug when feeling that way.  I thought my husband was going to lose it in that office.  It’s heinous really and I am so deeply sorry that we were treated this way, forced to figure things out on our own and forced to claw our way back to normal.  And the length of time for healing in relation to use is beyond ridiculous and unforgivable. 

 

 

 

[[Be...]]

 

I had prior use of a benzo but it was as needed and never taken consecutive days. This could have caused kindling for what happened to me in 2018 but I don’t know.

 

RKO, I think there is something to this prior non consecutive use, at least for a few of us who seem particularly sensitive.  I know from posts here and various positions elsewhere that the kindling phenomenon is contested (no definitive studies, of course), but there seems to be something about priming the pump, if you will.  Who knows, but for us unlucky souls it sure didn’t take much to unleash this hell.  It’s one of the things that bothers me most about current advocacy guidance for the medical community that somehow it’s still okay to prescribe as long as it’s less than two weeks.  I was in the ER within less than 2 weeks because of a benzo.  I knew something was up way before that too, but my Dr assured me it wasn’t the benzo.  I wish to god I hadn’t listened to him and started up again after stopping after the third day.  Even better, had trusted my gut to not take it in the first place (but again, he assured me that he prescribed it to little old ladies all the time so I was safe—he also said, “you don’t have an addictive personality.” UGH!).  There is just so much wrong with the prescribing practices, the myths and false perceptions that this is just a mild sedative, and the lack of knowledge about how quickly harm can happen.  If only…

 

I do not think this is all your fault, RKO.  None of this is our fault.  Do you really think if proper informed consent were offered we would still be here, that we would have willingly taken a pill knowing we might be in this current situation?  Even if we would have (which I doubt), we were still let down because we were not listened to.  Our symptoms and reactions were blown off as not possible or not related to the drug.  We were left hanging.  I was so ill and non functioning my husband had to come with to an appointment after my ER visit where we were trying to get help on how to get off, how to taper down and my former Dr said he didn’t know how to help me, that what I was experiencing wasn’t possible, that I should be taking more of the drug when feeling that way.  I thought my husband was going to lose it in that office.  It’s heinous really and I am so deeply sorry that we were treated this way, forced to figure things out on our own and forced to claw our way back to normal.  And the length of time for healing in relation to use

is beyond ridiculous and unforgivable.

 

I totally believe my prior short term 2 week benzo use contributed to this withdrawal. Without a doubt.  I also used Benzo’s very intermittently between the attivan use in 2016 to the 5 month Valium use that started in 2019.  I used anti depressants for a short time in 2016 also,  I believe this all contributed towards this withdrawal.

 

I totally get the self blame with all of this - I really do,  I still go there sometimes but I’ve learned I have to pull myself back.  I take some responsibility I’m all of this:  self blame for me only serves to hold me back - to put me into that space of self loathing, self hatred & regret & this doesn’t help BWD one bit.  I’m learning to forgive myself.  I’m human,  my mistake was not researching what a psychologist originally prescribed,  I’m allowed to make mistakes, I’m not super human,  Yes I dearly wish I didn’t have to go through this but here I am & I have to learn from it & make the best of it because I know I will come out the other end & I don’t want to being more negativity with me when I do. I want to come out of this s better person. To myself & for myself.  Learning to forgive myself. To like myself & one day even love myself enough to just stop the self Blame.  I think we are all in this here & wishing we had never gone onto Benzo’s, whilst being totally normal, & self blame takes away that space we can be using for other stuff - if that makes sense.  I think we need to forgive ourselves, for however small a part we played In going on Benzo’s. I will never take good things or good days for granted again.  I’m going to be kinder to myself & slow down so I don’t need a pill to keep going & not let other people down.  Because in the end I let myself down. 

 

 

[[...]]

 

I had prior use of a benzo but it was as needed and never taken consecutive days. This could have caused kindling for what happened to me in 2018 but I don’t know.

 

RKO, I think there is something to this prior non consecutive use, at least for a few of us who seem particularly sensitive.  I know from posts here and various positions elsewhere that the kindling phenomenon is contested (no definitive studies, of course), but there seems to be something about priming the pump, if you will.  Who knows, but for us unlucky souls it sure didn’t take much to unleash this hell.  It’s one of the things that bothers me most about current advocacy guidance for the medical community that somehow it’s still okay to prescribe as long as it’s less than two weeks.  I was in the ER within less than 2 weeks because of a benzo.  I knew something was up way before that too, but my Dr assured me it wasn’t the benzo.  I wish to god I hadn’t listened to him and started up again after stopping after the third day.  Even better, had trusted my gut to not take it in the first place (but again, he assured me that he prescribed it to little old ladies all the time so I was safe—he also said, “you don’t have an addictive personality.” UGH!).  There is just so much wrong with the prescribing practices, the myths and false perceptions that this is just a mild sedative, and the lack of knowledge about how quickly harm can happen.  If only…

 

I do not think this is all your fault, RKO.  None of this is our fault.  Do you really think if proper informed consent were offered we would still be here, that we would have willingly taken a pill knowing we might be in this current situation?  Even if we would have (which I doubt), we were still let down because we were not listened to.  Our symptoms and reactions were blown off as not possible or not related to the drug.  We were left hanging.  I was so ill and non functioning my husband had to come with to an appointment after my ER visit where we were trying to get help on how to get off, how to taper down and my former Dr said he didn’t know how to help me, that what I was experiencing wasn’t possible, that I should be taking more of the drug when feeling that way.  I thought my husband was going to lose it in that office.  It’s heinous really and I am so deeply sorry that we were treated this way, forced to figure things out on our own and forced to claw our way back to normal.  And the length of time for healing in relation to use is beyond ridiculous and unforgivable.

 

Hi sunshine, just curious but after exercise did you say it brought on an acute wave? And that your baseline is now worse following said exercise?

[[Wa...]]

Hello everyone!

 

Month 5 was hell. Agony, Anger, Rage, Depression, Self-pity & DP have created a determination in me I didn't know I still had. Trauma has been a companion of mine for many years now - I never thought I'd end up fighting an even worst battle. Though evil thoughts were inhabiting my being kept gnawing at me from every fiber, I was always grateful to be alive before going to sleep. Physically, sometimes I think my body is a big lump of mush but I push through. I can still walk, talk, eat, take a shower and sleep... that's all I really need.

 

I have been feeling great for the past few days. I have been spending time outside with my daughter, cherishing every second we have together before she starts kindergarten in September. It's bittersweet to think that my youngest child is starting school - I'll be bored out of my mind and twiddling my thumbs! 

 

I miss you all and sending you hugs filled with love.

 

Andie, xx

 

 

[[Be...]]

Hello everyone!

 

Month 5 was hell. Agony, Anger, Rage, Depression, Self-pity & DP have created a determination in me I didn't know I still had. Trauma has been a companion of mine for many years now - I never thought I'd end up fighting an even worst battle. Though evil thoughts were inhabiting my being kept gnawing at me from every fiber, I was always grateful to be alive before going to sleep. Physically, sometimes I think my body is a big lump of mush but I push through. I can still walk, talk, eat, take a shower and sleep... that's all I really need.

 

I have been feeling great for the past few days. I have been spending time outside with my daughter, cherishing every second we have together before she starts kindergarten in September. It's bittersweet to think that my youngest child is starting school - I'll be bored out of my mind and twiddling my thumbs! 

 

I miss you all and sending you hugs filled with love.

 

Andie, xx

 

You are doing really well. I know it doesn’t feel like you are - but you are doing amazingly.  Keep going. Keep overcoming those evil thoughts. It’s not going to be like this forever - you are healing, you will be healed - just keep putting one foot in front of the other.

Xx

[[...]]

Hello everyone!

 

Month 5 was hell. Agony, Anger, Rage, Depression, Self-pity & DP have created a determination in me I didn't know I still had. Trauma has been a companion of mine for many years now - I never thought I'd end up fighting an even worst battle. Though evil thoughts were inhabiting my being kept gnawing at me from every fiber, I was always grateful to be alive before going to sleep. Physically, sometimes I think my body is a big lump of mush but I push through. I can still walk, talk, eat, take a shower and sleep... that's all I really need.

 

I have been feeling great for the past few days. I have been spending time outside with my daughter, cherishing every second we have together before she starts kindergarten in September. It's bittersweet to think that my youngest child is starting school - I'll be bored out of my mind and twiddling my thumbs! 

 

I miss you all and sending you hugs filled with love.

 

Andie, xx

 

So glad to hear you are feeling better Andie!  Month 5 was awful for me too.  At month 7 I am feeling pretty good.  It gets better from here!

[[su...]]

 

I had prior use of a benzo but it was as needed and never taken consecutive days. This could have caused kindling for what happened to me in 2018 but I don’t know.

 

RKO, I think there is something to this prior non consecutive use, at least for a few of us who seem particularly sensitive.  I know from posts here and various positions elsewhere that the kindling phenomenon is contested (no definitive studies, of course), but there seems to be something about priming the pump, if you will.  Who knows, but for us unlucky souls it sure didn’t take much to unleash this hell.  It’s one of the things that bothers me most about current advocacy guidance for the medical community that somehow it’s still okay to prescribe as long as it’s less than two weeks.  I was in the ER within less than 2 weeks because of a benzo.  I knew something was up way before that too, but my Dr assured me it wasn’t the benzo.  I wish to god I hadn’t listened to him and started up again after stopping after the third day.  Even better, had trusted my gut to not take it in the first place (but again, he assured me that he prescribed it to little old ladies all the time so I was safe—he also said, “you don’t have an addictive personality.” UGH!).  There is just so much wrong with the prescribing practices, the myths and false perceptions that this is just a mild sedative, and the lack of knowledge about how quickly harm can happen.  If only…

 

I do not think this is all your fault, RKO.  None of this is our fault.  Do you really think if proper informed consent were offered we would still be here, that we would have willingly taken a pill knowing we might be in this current situation?  Even if we would have (which I doubt), we were still let down because we were not listened to.  Our symptoms and reactions were blown off as not possible or not related to the drug.  We were left hanging.  I was so ill and non functioning my husband had to come with to an appointment after my ER visit where we were trying to get help on how to get off, how to taper down and my former Dr said he didn’t know how to help me, that what I was experiencing wasn’t possible, that I should be taking more of the drug when feeling that way.  I thought my husband was going to lose it in that office.  It’s heinous really and I am so deeply sorry that we were treated this way, forced to figure things out on our own and forced to claw our way back to normal.  And the length of time for healing in relation to use is beyond ridiculous and unforgivable.

 

Hi sunshine, just curious but after exercise did you say it brought on an acute wave? And that your baseline is now worse following said exercise?

 

RKO,

 

I'm not sure what triggered the acute wave that ended up changing my baseline.  My gut is that it was some stress that I encountered and then I had a dermatology appointment the following week that entailed a local anesthetic.  A couple Buddies suggested that it may have just been the cumulative effective of pushing myself too hard with my workouts, but none of it really adds up (except the local I received because that night I had another acute wave).  My workouts were not intense or strenuous at all.  All I know is that I had a very rough 6-7 weeks and I am just now feeling better, like I have finally pulled out of it.  The new baseline I experienced after the wave was very different and so much more physical in nature.  I am now feeling so much better mentally though and my clarity and "multi-tasking" brain feels back to normal when not experiencing a wave now.  So that is really good news.  The past week I have been feeling better physically too, so it feels like a nice window, something I really needed.  I'm not exercising again save for walks.  I've been going for evening 2 mile walks and doing well with this.  I don't dare try jogging or any other low impact quite yet as I want to gauge things a bit more.  I hate that feeling too because I worked hard to get back into working out during that 4th month and seemed to be doing so well, plus the exercise boosted my moral.  I can't wait to get there again. 

[[su...]]

Hello everyone!

 

Month 5 was hell. Agony, Anger, Rage, Depression, Self-pity & DP have created a determination in me I didn't know I still had. Trauma has been a companion of mine for many years now - I never thought I'd end up fighting an even worst battle. Though evil thoughts were inhabiting my being kept gnawing at me from every fiber, I was always grateful to be alive before going to sleep. Physically, sometimes I think my body is a big lump of mush but I push through. I can still walk, talk, eat, take a shower and sleep... that's all I really need.

 

I have been feeling great for the past few days. I have been spending time outside with my daughter, cherishing every second we have together before she starts kindergarten in September. It's bittersweet to think that my youngest child is starting school - I'll be bored out of my mind and twiddling my thumbs! 

 

I miss you all and sending you hugs filled with love.

 

Andie, xx

 

Hoping these feeling better days have continued for you, Andie!  It's so very true how we seem to cherish moments that normally would be benign and just part of the every day schedule.  Hugs in return!

[[Wa...]]

Hello everyone!

 

Month 5 was hell. Agony, Anger, Rage, Depression, Self-pity & DP have created a determination in me I didn't know I still had. Trauma has been a companion of mine for many years now - I never thought I'd end up fighting an even worst battle. Though evil thoughts were inhabiting my being kept gnawing at me from every fiber, I was always grateful to be alive before going to sleep. Physically, sometimes I think my body is a big lump of mush but I push through. I can still walk, talk, eat, take a shower and sleep... that's all I really need.

 

I have been feeling great for the past few days. I have been spending time outside with my daughter, cherishing every second we have together before she starts kindergarten in September. It's bittersweet to think that my youngest child is starting school - I'll be bored out of my mind and twiddling my thumbs! 

 

I miss you all and sending you hugs filled with love.

 

Andie, xx

 

You are doing really well. I know it doesn’t feel like you are - but you are doing amazingly.  Keep going. Keep overcoming those evil thoughts. It’s not going to be like this forever - you are healing, you will be healed - just keep putting one foot in front of the other.

Xx

 

Thank you, Bess! I read your posts/replies and am in awe of you.

[[Wa...]]

Hello everyone!

 

Month 5 was hell. Agony, Anger, Rage, Depression, Self-pity & DP have created a determination in me I didn't know I still had. Trauma has been a companion of mine for many years now - I never thought I'd end up fighting an even worst battle. Though evil thoughts were inhabiting my being kept gnawing at me from every fiber, I was always grateful to be alive before going to sleep. Physically, sometimes I think my body is a big lump of mush but I push through. I can still walk, talk, eat, take a shower and sleep... that's all I really need.

 

I have been feeling great for the past few days. I have been spending time outside with my daughter, cherishing every second we have together before she starts kindergarten in September. It's bittersweet to think that my youngest child is starting school - I'll be bored out of my mind and twiddling my thumbs! 

 

I miss you all and sending you hugs filled with love.

 

Andie, xx

 

So glad to hear you are feeling better Andie!  Month 5 was awful for me too.  At month 7 I am feeling pretty good.  It gets better from here!

 

JBen, my darling! How are you feeling? I miss you!

 

 

[[Wa...]]

Hello everyone!

 

Month 5 was hell. Agony, Anger, Rage, Depression, Self-pity & DP have created a determination in me I didn't know I still had. Trauma has been a companion of mine for many years now - I never thought I'd end up fighting an even worst battle. Though evil thoughts were inhabiting my being kept gnawing at me from every fiber, I was always grateful to be alive before going to sleep. Physically, sometimes I think my body is a big lump of mush but I push through. I can still walk, talk, eat, take a shower and sleep... that's all I really need.

 

I have been feeling great for the past few days. I have been spending time outside with my daughter, cherishing every second we have together before she starts kindergarten in September. It's bittersweet to think that my youngest child is starting school - I'll be bored out of my mind and twiddling my thumbs! 

 

I miss you all and sending you hugs filled with love.

 

Andie, xx

 

Hoping these feeling better days have continued for you, Andie!  It's so very true how we seem to cherish moments that normally would be benign and just part of the every day schedule.  Hugs in return!

 

Lovely Sunshine! How I miss your words of encouragement. How are you? Hang in there sweet pea!!!

[[...]]

Hello everyone!

 

Month 5 was hell. Agony, Anger, Rage, Depression, Self-pity & DP have created a determination in me I didn't know I still had. Trauma has been a companion of mine for many years now - I never thought I'd end up fighting an even worst battle. Though evil thoughts were inhabiting my being kept gnawing at me from every fiber, I was always grateful to be alive before going to sleep. Physically, sometimes I think my body is a big lump of mush but I push through. I can still walk, talk, eat, take a shower and sleep... that's all I really need.

 

I have been feeling great for the past few days. I have been spending time outside with my daughter, cherishing every second we have together before she starts kindergarten in September. It's bittersweet to think that my youngest child is starting school - I'll be bored out of my mind and twiddling my thumbs! 

 

I miss you all and sending you hugs filled with love.

 

Andie, xx

 

So glad to hear you are feeling better Andie!  Month 5 was awful for me too.  At month 7 I am feeling pretty good.  It gets better from here!

 

JBen, my darling! How are you feeling? I miss you!

 

Hey Andie.  I missed our chats as well.  Glad you are posting again. 

 

Im doing well enough to be working full time without having to call in sick all the time.  I’ve even started going back to school part time.  Life is a bit better.  I am still up at 4am with surges.  It is about that time here now.  Still have surges after eating, after stress, after exercise.  Most of the mental stuff has gone away.  It is better.  If all goes well by December I should be pretty much healed.  That is my goal anyway, haha!

 

How are you doing today Andie?

 

@sunshine75 and @fluffernutter123 how are yall doing?

[Guest [fl...]]

Hi shorties, it looks like everyone has been improving, which is amazing! I am so glad to hear it. I must say I am a bit envious.

 

I am improving too actually, but I had to start pregabalin. I am in month 9 and the mental torture was simply too debilitating. I was vomiting, extreme fear, chemical anxiety, a few hours window at night. Although it had been improving month by month, it wasn't enough. I felt like I wasn't going to make it.

 

My dose of pregabalin is small, but it's a powerful drug. I hit my hormone valley soon, and with that often a huge set back. It is hard to inch forward each month, only to be dragged back for weeks again. It begins to cause despair. Most symptoms are mental - I feel a prisoner in my mind. I wrote of it in a milestone, but sadly, no one offered much encouragement. It is interesting to note the range of responses to different milestone posts. Ah, well.

 

That said, on pregabalin, I've been much more normal. I am quite simply just afraid of my brain. I am afraid of the surges, so even though I feel better I also feel a bit paralyzed. I just hope that this feeling goes away as I gain confidence over time.

 

Anyway, I am so glad to hear that you all are having good days, feeling functional and healing. That is tremendous news.

 

Hugs.

[[su...]]

Hi shorties, it looks like everyone has been improving, which is amazing! I am so glad to hear it. I must say I am a bit envious.

 

I am improving too actually, but I had to start pregabalin. I am in month 9 and the mental torture was simply too debilitating. I was vomiting, extreme fear, chemical anxiety, a few hours window at night. Although it had been improving month by month, it wasn't enough. I felt like I wasn't going to make it.

 

My dose of pregabalin is small, but it's a powerful drug. I hit my hormone valley soon, and with that often a huge set back. It is hard to inch forward each month, only to be dragged back for weeks again. It begins to cause despair. Most symptoms are mental - I feel a prisoner in my mind. I wrote of it in a milestone, but sadly, no one offered much encouragement. It is interesting to note the range of responses to different milestone posts. Ah, well.

 

That said, on pregabalin, I've been much more normal. I am quite simply just afraid of my brain. I am afraid of the surges, so even though I feel better I also feel a bit paralyzed. I just hope that this feeling goes away as I gain confidence over time.

 

Anyway, I am so glad to hear that you all are having good days, feeling functional and healing. That is tremendous news.

 

Hugs.

 

fluffernutter, I hate that you had to go to a med to help you out, but I'm so glad that it is helping as that is what matters.  Keep hanging on, okay!?

 

I'll have to go back and look at your milestone post; I've been only peeking on the forum every so often lately as trying to just enjoy some of this lessening of symptoms on my end.  Don't worry if you don't get a lot of feedback; I know I've had that happen in the past and was likewise bothered by the lack of support, but I do get it in hindsight and try not to take it personal.  Sometimes it's gleaned over by other Buddies, sometimes it's just missed completely, and sometimes I think people just may not know what to say in that moment and move on. Could be many different reasons, but our silly brains even latch on to the lack of support when we feel most desperate (at least I know I have).  Sending you hugs.

[[su...]]

Shorties,

 

I'm just popping on here to offer some lighter, happier news--because quite frankly I've been a downer since the end of April other than my post about getting that 7 hour sleep stretch.  I am just going to classify myself in a window right now, albeit not 100%.  The physical pain/tightness in my back has lightened so much I only seem to experience it in the mornings now.  In it's place, I am having random moments of various muscle fasciculations or soreness in different areas along with some electric sensations in my left foot along with some in and out ear and head pressure--some tinnitus too with it.  Mild moments of DR or cog fog, but they are truly mild.  One of my old baseline symptoms of tongue "issues" is back full force though (feeling numb or with mild burning sensations along with increased saliva flow that appears for no reason--annoying as heck), BUT I will totally take it if it means the other crap doesn't come back.  Sleep has been decent.  I've had a few more nights of 6-7 hour stretches (which is so darn AMAZING).  Mentally, other than the short bursts of DR or cog fog, I am feeling pretty darn clear and stable.  I've not dared try working out again though.  2-3 miles are all I am doing right now.  Hoping I can inch my way back again sooner than later. 

 

It's weird still having issues that prior to this experience I would have complained about or scheduled an appointment for, but instead I feel good about it all, like "Hey, come on over annoying symptoms, you are most welcomed because you are NOT the harbinger of all things bad in Dante's circles of hell like those other symptoms were."  What a perspective change.  I can't wait until a window of 100% (and fully being fully HEALED).  It's like I can taste it and want it SOOOOOOO bad. 

 

Anyways, I'm sending my strength on as I have breathing room again.  For how long, who knows?!  But I sure hope it's a good run. 

 

Hugs, my friends.