Severe case not healing

[[Wi...]]

 

What do you do when you are a severe case not healing? I know that you want to say “you will heal”, etc., but I have been drug injured for 4 years with the last 1,5 getting progressively worse. I saw healing the first 2,5 years, yes. But the “setbacks” injured me further… Every month I would get new issues telling myself yeah okay in 6 months I will start getting better. I haven’t. New symptoms keep coming on. What I had a year ago as an occasional occurrence is now with me every day. The occasional electricity in my body became a daily thing too, like a live wire is stuck to the back of my neck affecting everything driving the electricity all over me. Add to that paresthesia all over. Head sensations that make me unable to do anything. Oh and the amazing burning inside that feels like I have something toxic in me, I have it every single day too and it began a year ago as a subtle weird burn once in a while. It can be in my head, throat, stomach or spreading down my legs, it’s not even pain, it’s this altered state like I have swallowed bleach. I am terrified that it will get even worse and seeing what has happened it probably will. Everything has become worse. Everything. I feel like I am falling apart. I am depressed, anxious and see zero hope. Zero. I know I would have hope seeing any improvement but the truth is I haven’t seen any. I am the horror story. I want to be here for my baby but it’s really getting hard to survive. Groundhog day but every month realising that it got even worse. What’s the point… I had a conversation with my father who told me that well if I am not healing I have to accept it and live with it. Well, excuse me, try to live with fire and electrocution every day. And try seeing that get worse month by month. Good luck. 

 

[[Gi...]]

@[Wi...]

 You are not a horror story. You are in a long wave. Is there anything you took, ate or done that might have caused it? This will pass ❤️. Your baby loves you and keeps you motivated, happy and fulfilled 😊.

[[...]]

I am right here with you. It's been soo long and honestly I can bearly write this message. I have such bad symptoms still I keep thinking their is something else wrong with me. I can't even stand in the shower so I have to have someone there with me. Can bearly concentrate. Legs give out when I walk. The seizures keep sending me to the hospital.  And I'm on all the meds still besides benzos . I don't understand it. So trust me your not alone in this. It's scary I know. 

[[Br...]]

Hello @[...] and welcome to BenzoBuddies!  

Please start a thread of your own on the Benzodiazepine withdrawal, Use & Recovery forum .  

Please tell us more about your experience with benzos and let us know how we can help you. 

We're glad you found us!

Brighterday

[[Nu...]]

I am so sorry, @[Wi...]. I couldn't tell in your history-- when did you jump off benzos?

It's hard for us to take the misery we live in. I get you. I have faith that something positive has to be in our future, though I know that doesn't help.

[[ns...]]

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

What do you do when you are a severe case not healing? I know that you want to say “you will heal”, etc., but I have been drug injured for 4 years with the last 1,5 getting progressively worse. I saw healing the first 2,5 years, yes. But the “setbacks” injured me further… Every month I would get new issues telling myself yeah okay in 6 months I will start getting better. I haven’t. New symptoms keep coming on. What I had a year ago as an occasional occurrence is now with me every day. The occasional electricity in my body became a daily thing too, like a live wire is stuck to the back of my neck affecting everything driving the electricity all over me. Add to that paresthesia all over. Head sensations that make me unable to do anything. Oh and the amazing burning inside that feels like I have something toxic in me, I have it every single day too and it began a year ago as a subtle weird burn once in a while. It can be in my head, throat, stomach or spreading down my legs, it’s not even pain, it’s this altered state like I have swallowed bleach. I am terrified that it will get even worse and seeing what has happened it probably will. Everything has become worse. Everything. I feel like I am falling apart. I am depressed, anxious and see zero hope. Zero. I know I would have hope seeing any improvement but the truth is I haven’t seen any. I am the horror story. I want to be here for my baby but it’s really getting hard to survive. Groundhog day but every month realising that it got even worse. What’s the point… I had a conversation with my father who told me that well if I am not healing I have to accept it and live with it. Well, excuse me, try to live with fire and electrocution every day. And try seeing that get worse month by month. Good luck. 

Willhealsoon, hi sweetheart. I don't remember if u said you've seen a neurologist. Have you and if so what did they say, if not, please see one. 

If the 1st one didn't help see another until u get answers!

There has to be something someone can do to give u relief!

Are u taking anything, have u tried Gabapentin, Trileptal any nerve drugs. Lyrica?

I know there must be something that will give you relief!

Please keep pushing doctors, don't give up. We have to be our own advocate you know, I've had to push for answers for yrs, so has our son!

I keep u in my prayers and I just wanted you to know that I'm genuinely trying to understand what's going on with you and want to try to figure out who can help u. 

I'll be around if u want to talk ok

Take care

Ns

[[ns...]]

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

Willhealsoon, hi sweetheart. I don't remember if u said you've seen a neurologist. Have you and if so what did they say, if not, please see one. 

If the 1st one didn't help see another until u get answers!

There has to be something someone can do to give u relief!

Are u taking anything, have u tried Gabapentin, Trileptal any nerve drugs. Lyrica?

I know there must be something that will give you relief!

Please keep pushing doctors, don't give up. We have to be our own advocate you know, I've had to push for answers for yrs, so has our son!

I keep u in my prayers and I just wanted you to know that I'm genuinely trying to understand what's going on with you and want to try to figure out who can help u. 

I'll be around if u want to talk ok

Take care

Ns

Have u ever heard of guillian barr virus? I think I've spelled it right. Or conversion? There are many neurological disorders that could explain this and there are therapies for them to help. I will look Into these ok, I'll need to know more about your symptoms, onset of symptoms etc 

Possible Autoimmune diseases?

I know you said u didn't have lyme, have u been tested? Do u have any rash?

Please make a journal of everything for yourself and any specialists ok

It's time you find some answers unless you've already exhausted every avenue. 

Ns

[[Wi...]]

8 hours ago, [[G...] said:

@[Wi...]

 You are not a horror story. You are in a long wave. Is there anything you took, ate or done that might have caused it? This will pass ❤️. Your baby loves you and keeps you motivated, happy and fulfilled 😊.

No. Ever since my setback began I have been getting worse and worse with time. The last meds I was given were in my c-section almost 10 months ago. At the end of December this wave began and has me bedridden. Everything is 10 times worse. I stopped breastfeeding in December, this is the only change I made. My coach says it makes sense that possibly hormones from pregnancy and breastfeeding were covering up some of my issues and once I stopped it got as bad as it gets but not sure about that. I did have a huge window at the last 1,5 months of my pregnancy and a few weeks afterwards so it seemed to me that back then hormones made me better. But ever since I started getting worse after pregnancy it’s only been a downward spiral. This wave has been going on for 2,5 months worse than anything ever. 

Edited March 11 by [Wi...]

[[Wi...]]

4 hours ago, [[n...] said:

Willhealsoon, hi sweetheart. I don't remember if u said you've seen a neurologist. Have you and if so what did they say, if not, please see one. 

If the 1st one didn't help see another until u get answers!

There has to be something someone can do to give u relief!

Are u taking anything, have u tried Gabapentin, Trileptal any nerve drugs. Lyrica?

I know there must be something that will give you relief!

Please keep pushing doctors, don't give up. We have to be our own advocate you know, I've had to push for answers for yrs, so has our son!

I keep u in my prayers and I just wanted you to know that I'm genuinely trying to understand what's going on with you and want to try to figure out who can help u. 

I'll be around if u want to talk ok

Take care

Ns

I am not touching meds ever again :/ I went down that road after the Cipro and it just made me worse. Antidepressants have me full body burning attacks like I was on fire. Lyrica did not help and it gave me akathisia when I was withdrawing. 
But I was healing from that. It was the meds for infertility that did me in so badly. And then the antibiotic for a UTI. 

I have been tested for many things and nothing was ever positive, they tell me I am healthy. No Lyme, no rash, nothing. I got new symptoms right after the hormonal med and it all started spiralling from there on. Everything began as a mild sensation once in a while and over time all symptoms got worse and worse. 

I think I have some weird form of akathisia because yesterday the electricity got very bad and reached my legs pulsating down into them and I felt like jumping out of my skin. Today it’s back to electricity at the back of my neck, head pressure at the back of my head and paresthesia all over like a swarm of angry bees with itching, tingling and burning. But that compared to the pulsating electricity is more manageable. 
 

But why since then setback it’s all getting worse with time I have no idea. Too many meds, too much damage  I remember the electricity began 2 months into my setback but it was mild and rare. Now it’s severe and I can feel it flowing down my back all the time, just the intensity changes. 

Edited March 11 by [Wi...]

[[Ma...]]

I’ve not experienced this but have you had a hormone panel done? I’m wondering if something like hydrocortisone bioidentical form could be of use or some hormone replacement therapy?

As @[ns...] mentioned, perhaps a neurologist could be of use.

Please keep searching until you get some answers. Sending you strength to borrow ❤️‍🩹

[[WU...]]

I'm starting to think a bit differently, more psychologically. Yes we have been badly affected by the drugs but at the same time I am aware of an enormous amount of tension being held in the body. Tension, or to give it other names: anxiety, anger and rage, has the power to produce the exact same symptoms we are experiencing, even if we had never taken these drugs. So while we are waiting for the body to repair itself from the effects of the drug it might be a good time to become aware of all the tension and its cause. I know it all sounds a bit wacky but the mind and the body are so intertwined, so instead of concentrating on the symptoms I feel it is the right time to go a bit deeper. We are amazing creatures but we often get side tracked from the underlying cause. Maybe your father being a doctor is a bit intimidating for you as he will always play the superior role, he knows best etc.. but does he know much about the mind?  He seems to be underplaying how you feel, maybe in an effort to make things seem lighter and less serious. It is a valid strategy except it seems to be having the opposite effect than he is intending! 

My favourite guy for exploring the mind and the body is Jim Prussack on YT. Very comforting and relaxing voice which is a good start. So many others speak way too fast and seem to race through their explanations but this guy is slow and easy to listen to.  Basically anything that helps to quieten the nervous system, even while we are still healing is worth looking into.   Just my thoughts on what we are going through

 

[[Wi...]]

35 minutes ago, [[W...] said:

I'm starting to think a bit differently, more psychologically. Yes we have been badly affected by the drugs but at the same time I am aware of an enormous amount of tension being held in the body. Tension, or to give it other names: anxiety, anger and rage, has the power to produce the exact same symptoms we are experiencing, even if we had never taken these drugs. So while we are waiting for the body to repair itself from the effects of the drug it might be a good time to become aware of all the tension and its cause. I know it all sounds a bit wacky but the mind and the body are so intertwined, so instead of concentrating on the symptoms I feel it is the right time to go a bit deeper. We are amazing creatures but we often get side tracked from the underlying cause. Maybe your father being a doctor is a bit intimidating for you as he will always play the superior role, he knows best etc.. but does he know much about the mind?  He seems to be underplaying how you feel, maybe in an effort to make things seem lighter and less serious. It is a valid strategy except it seems to be having the opposite effect than he is intending! 

My favourite guy for exploring the mind and the body is Jim Prussack on YT. Very comforting and relaxing voice which is a good start. So many others speak way too fast and seem to race through their explanations but this guy is slow and easy to listen to.  Basically anything that helps to quieten the nervous system, even while we are still healing is worth looking into.   Just my thoughts on what we are going through

Oh, I actually know about this. I try to implement it but when the electric sensations hit it’s just impossible and I freak out again. Like I can understand how back pain and some other pain can be caused by the mind but not such severe electrical issues. So telling myself it’s benign feels like lying to myself. I can calm myself through some symptoms but some of them are way too severe. Have you had any progress with it?

I also tried approaching it with a different approach, this is drug damage, yes, but calming the CNS might help so I tried doing Primal Trust course but again, when the symptoms kick into high gear I am hysterical again. I have huge health anxiety. 

 

1 hour ago, [[M...] said:

I’ve not experienced this but have you had a hormone panel done? I’m wondering if something like hydrocortisone bioidentical form could be of use or some hormone replacement therapy?

As @[ns...] mentioned, perhaps a neurologist could be of use.

Please keep searching until you get some answers. Sending you strength to borrow ❤️‍🩹

I don’t think trying to treat akathisia like sensations with more meds is a good step to take. Because I talked to a few people and they say they had what I have as part of aka. My setback began with a hormonal med so no way I am going to touch anything. I am completely anti-med unless life or death. I have had many adverse reactions even to supplements. I have huge PTSD around it. Everything I have ever tried always backfires and I end up worse than before. I am done seeking a solution :/  

[[Ma...]]

@[Wi...] Contact Chris Paige. He had severe aka and once healed founded an aka Foundation. If anyone has an answer/solution (if you want one), it would most likely be him.

[[Ra...]]

1 hour ago, [[M...] said:

@[Wi...] Contact Chris Paige. He had severe aka and once healed founded an aka Foundation. If anyone has an answer/solution (if you want one), it would most likely be him.

@[Wi...] chris paige charges 100$ for 30min video call

[[ti...]]

I 'm 3 years off and in bad shape as well. The "we all heal " mantra that gets pushed around here is not true for all of us. I'm sorry you're stuck like this too. I want to just throw my body away and start over but I can't. 

[[ns...]]

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

I am not touching meds ever again :/ I went down that road after the Cipro and it just made me worse. Antidepressants have me full body burning attacks like I was on fire. Lyrica did not help and it gave me akathisia when I was withdrawing. 
But I was healing from that. It was the meds for infertility that did me in so badly. And then the antibiotic for a UTI. 

I have been tested for many things and nothing was ever positive, they tell me I am healthy. No Lyme, no rash, nothing. I got new symptoms right after the hormonal med and it all started spiralling from there on. Everything began as a mild sensation once in a while and over time all symptoms got worse and worse. 

I think I have some weird form of akathisia because yesterday the electricity got very bad and reached my legs pulsating down into them and I felt like jumping out of my skin. Today it’s back to electricity at the back of my neck, head pressure at the back of my head and paresthesia all over like a swarm of angry bees with itching, tingling and burning. But that compared to the pulsating electricity is more manageable. 
 

But why since then setback it’s all getting worse with time I have no idea. Too many meds, too much damage  I remember the electricity began 2 months into my setback but it was mild and rare. Now it’s severe and I can feel it flowing down my back all the time, just the intensity changes. 

Willhealsoon, we've talked these symptoms before, I have these. I was mostly thinking that seeing a neurologist might be a good idea. I'm still not clear if you were ever on a benzo, I haven't looked at your history. Of you were, then I would think most of you're symptoms are from the benzo injury. The cipro is a different story, and antibiotics like cipro can cause neuro symptoms as well. This is why I brought up guillian barr virus, a neurologist could determine if you have this or any other virus that affects the nervous system. I've had spider bites, had to take antibiotics for encephalitis, taken cipro on at least 3 different occasions.

I know these drugs can affect our nervous system.

I was given clyndemycin when I was on Celexa, the two are incompatible. I told the er doc no mycin drugs, he gave me 2 Iv bags full. I went home with internal tremors and I don't think they ever went away, only lessened a bit.

I've had neurological issues for yrs and tested for MS and lupus several times. I think a neurologist could help u get to the bottom of your symptoms if they're not benzo related and even with that, a neurologist can help.

Also, when we get so engulfed in our symptoms we can add to the tension which affects our nervous system, in turn causing these electrical type sensations. When I'm still, calm not moving and distracted these symptoms aren't very pronounced, they aren't as noticeable. If I get irritable or upset or move around, or any emotion or excitement,  the symptoms rev up and a spiral begins and starts everything over again. Its very difficult being that calm all the time.

Try Being calm and still, quiet and see if you feel better even for a minute. If you notice a break in your symptoms, I think you'll have clarity here. If not, then maybe it's time to see someone like a neurologist, this is just a suggestion. 

I'm going to see another neurologist even though I know that being calm and quiet helps me, but I am numb from the waste down and sitting causes pain in my lower back. So I need to know why.

We all need answers, if it's withdrawal, we need only to ride it out, be still and practice being calm and changing our focus, meditation, exposure therapy and dealing with anxiety which is exasperated by withdrawal. 

If it's something else, then it's time to seek a specialists help, in hopes to give us answers and follow their recommendations. 

I'm truly sorry you are suffering so much, you sound so young and  wish only the best for you.

Kiss that baby girl for me! 

I pray you have a calm quiet day filled with happiness and joy, even if only for one day!

Ns

 

[[WU...]]

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

Like I can understand how back pain and some other pain can be caused by the mind but not such severe electrical issues

Actually electrical symptoms are on the list for anxiety according to this site  :https://www.anxietycentre.com/anxiety-disorders/symptoms/

They describe :

• Electric shock feeling, body zaps
• Electric pulsing throughout the body feeling

If you scroll down the page the list is extensive and mirrors all the symptoms we are going through.  I think  our brains are so altered by these drugs that we are all thrown into extreme anxiety.

I am only really starting to think about the psychological side of things as I feel it needs to be addressed alongside the physical. Is it working? I don't know but I'm going to carry on. Not expecting any quick fixes but can't do any harm to notice the body sensations and emotions and how they are interlinked.

One thing I noticed, the physical sensations got much worse after a meditation. This is quite common and possibly a sign we are getting in touch with our emotions and letting them "speak" instead of fighting them off and suppressing them. The mind is extremely powerful at producing symptoms.

[[Wi...]]

21 minutes ago, [[W...] said:

Actually electrical symptoms are on the list for anxiety according to this site  :https://www.anxietycentre.com/anxiety-disorders/symptoms/

They describe :

• Electric shock feeling, body zaps
• Electric pulsing throughout the body feeling

If you scroll down the page the list is extensive and mirrors all the symptoms we are going through.  I think  our brains are so altered by these drugs that we are all thrown into extreme anxiety.

I am only really starting to think about the psychological side of things as I feel it needs to be addressed alongside the physical. Is it working? I don't know but I'm going to carry on. Not expecting any quick fixes but can't do any harm to notice the body sensations and emotions and how they are interlinked.

One thing I noticed, the physical sensations got much worse after a meditation. This is quite common and possibly a sign we are getting in touch with our emotions and letting them "speak" instead of fighting them off and suppressing them. The mind is extremely powerful at producing symptoms.

Let us know if it helps you in the long run! 

[[ns...]]

12 minutes ago, [[W...] said:

Let us know if it helps you in the long run! 

Thank u Wu Wei!

 

12 minutes ago, [[W...] said:

Let us know if it helps you in the long run! 

 

[[Wi...]]

58 minutes ago, [[n...] said:

Willhealsoon, we've talked these symptoms before, I have these. I was mostly thinking that seeing a neurologist might be a good idea. I'm still not clear if you were ever on a benzo, I haven't looked at your history. Of you were, then I would think most of you're symptoms are from the benzo injury. The cipro is a different story, and antibiotics like cipro can cause neuro symptoms as well. This is why I brought up guillian barr virus, a neurologist could determine if you have this or any other virus that affects the nervous system. I've had spider bites, had to take antibiotics for encephalitis, taken cipro on at least 3 different occasions.

I know these drugs can affect our nervous system.

I was given clyndemycin when I was on Celexa, the two are incompatible. I told the er doc no mycin drugs, he gave me 2 Iv bags full. I went home with internal tremors and I don't think they ever went away, only lessened a bit.

I've had neurological issues for yrs and tested for MS and lupus several times. I think a neurologist could help u get to the bottom of your symptoms if they're not benzo related and even with that, a neurologist can help.

Also, when we get so engulfed in our symptoms we can add to the tension which affects our nervous system, in turn causing these electrical type sensations. When I'm still, calm not moving and distracted these symptoms aren't very pronounced, they aren't as noticeable. If I get irritable or upset or move around, or any emotion or excitement,  the symptoms rev up and a spiral begins and starts everything over again. Its very difficult being that calm all the time.

Try Being calm and still, quiet and see if you feel better even for a minute. If you notice a break in your symptoms, I think you'll have clarity here. If not, then maybe it's time to see someone like a neurologist, this is just a suggestion. 

I'm going to see another neurologist even though I know that being calm and quiet helps me, but I am numb from the waste down and sitting causes pain in my lower back. So I need to know why.

We all need answers, if it's withdrawal, we need only to ride it out, be still and practice being calm and changing our focus, meditation, exposure therapy and dealing with anxiety which is exasperated by withdrawal. 

If it's something else, then it's time to seek a specialists help, in hopes to give us answers and follow their recommendations. 

I'm truly sorry you are suffering so much, you sound so young and  wish only the best for you.

Kiss that baby girl for me! 

I pray you have a calm quiet day filled with happiness and joy, even if only for one day!

Ns

No, it was the Cipro that started this but it’s said to affect the same receptors. That’s why I am here, also it’s a better space than Cipro groups on fb. But I was then affected by the setbacks. Still it’s all the same nervous system injury. I talked to Angie Peacock and she said she has clients affected by different drugs, not only psych meds, it all looks the same.

I went to a few neurologists after the reaction to Cipro and psych meds, I had MRIs, EMGs, numerous blood tests checking for autoimmune issues. Nothing significant was found. They didn’t know what I had. All they could offer was pregabalin and that gave me bad wd including akathisia (that was later retriggered by my setback).  Pregabalin wd landed my in psych ward where the didn’t recognise akathisia and then tried to give me a cocktail of meds including seroquel. After all that it’s quite obvious to me it’s all iatrogenic in nature and doctors know nothing. 

My symptoms do change a lot in that it’s not very severe all the time. Right now it’s more neuropathic pain than the electricity. Which sucks too but it’s still better than electrocution.

I just feel it happened to a very wrong person. I have always had health anxiety and now it’s a nightmare. But who wouldn’t have it. It’s very difficult for me to keep my hopes up as I haven’t seen any improvement since the setbacks.

I really admire your attitude!

[[WU...]]

Yes I will report back ! Though nothing is easy as long as these benzos have been up to no good messing with our brains.   Every now and then I have a sense of a volcano of anger below the surface, quite daunting.  We are taught to keep our emotions in check as it is so much more "civilised" so we never have an outlet and we become walking pressure cookers. Obviously we need to find a safe and effective way of releasing it all. I think just knowing about it is half way there.

[[Du...]]

On 12/03/2024 at 00:59, [[R...] said:

@[Wi...] chris paige charges 100$ for 30min video call

Wat can they say..but the usual bullshit..have faith and hope..hold on

 

It's too much ..these ppl are exploiting the sick and desperate 

[[Ra...]]

5 hours ago, [[D...] said:

Wat can they say..but the usual bullshit..have faith and hope..hold on

It's too much ..these ppl are exploiting the sick and desperate 

@[Du...] you are definitely right. The thing which can us is just time and patience.

[[jo...]]

On 12/03/2024 at 04:31, [[t...] said:

I 'm 3 years off and in bad shape as well. The "we all heal " mantra that gets pushed around here is not true for all of us. I'm sorry you're stuck like this too. I want to just throw my body away and start over but I can't. 

I’m 4 years into this and severe. I’ve gotten worse rather than better. How does being this far out though, invalidate the idea that we all heal? Genuinely curious. I’m hoping and from what I’ve seen, it can take longer for some of us, so the duration doesn’t mean we won’t heal

[[jo...]]

On 12/03/2024 at 07:09, [[W...] said:

No, it was the Cipro that started this but it’s said to affect the same receptors. That’s why I am here, also it’s a better space than Cipro groups on fb. But I was then affected by the setbacks. Still it’s all the same nervous system injury. I talked to Angie Peacock and she said she has clients affected by different drugs, not only psych meds, it all looks the same.

I went to a few neurologists after the reaction to Cipro and psych meds, I had MRIs, EMGs, numerous blood tests checking for autoimmune issues. Nothing significant was found. They didn’t know what I had. All they could offer was pregabalin and that gave me bad wd including akathisia (that was later retriggered by my setback).  Pregabalin wd landed my in psych ward where the didn’t recognise akathisia and then tried to give me a cocktail of meds including seroquel. After all that it’s quite obvious to me it’s all iatrogenic in nature and doctors know nothing. 

My symptoms do change a lot in that it’s not very severe all the time. Right now it’s more neuropathic pain than the electricity. Which sucks too but it’s still better than electrocution.

I just feel it happened to a very wrong person. I have always had health anxiety and now it’s a nightmare. But who wouldn’t have it. It’s very difficult for me to keep my hopes up as I haven’t seen any improvement since the setbacks.

I really admire your attitude!

Can’t remember if we’ve already spoken before, but just wanted to tell you that an antibiotic started this all for me too (flagyl). Sometimes I get terrified that I won’t heal because flagyl doesn’t have the same “success story” documentation or community as the psych med community. But like Angie said, neurotoxicity seems to be similar with any med. I don’t think more psych meds are ever the answer. I’ve been suffering for four years and often feel like I won’t heal. But I think time off meds is what heals us. You’re not alone!