Kindling:can changes in brands cause this?

[[Pa...]]

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

I believe just learned  that I am kindling on another thread. Instead of a reaction to lorazepam.

This explains why im so miserable and I am heartbroken!

So sorry to hear this. Did you reinstate, or is it due to dosing?

[[Pa...]]

12 hours ago, [[B...] said:

@[Pa...],

I'm sorry, I didn't mean to imply that it was the same.  Maybe it's more like an intolerance to a filler.  This happened to me with an allergy med I was taking.  I took name brand Clarinex for 20 years, then the company was sold and it was put on hold.  I was given a generic that I never adjusted to.  Then, when the new company restarted manufacturing of the name brand, it was not the same.  I had to quit taking it.  I really hope you find a good solution.  I know how awful it is when this stuff gets messed with.

Thanks so much.

I totally agree with you that the repeated changes in brands puts people into acute. we know any given generic can vary in strength by 10% from brand -which means two different generics could vary by up to 20% in strength.

I also think after a period of time on these medications, we become sensitized to change.

Finally, I agree with you there may be an ingredient I am reacting to - here the alcohol used to print the name of the med on the capsule.

My post was confusing, I’m sorry, my brain is toast. As I’ve been tapering K, I’ve been relatively stable. Not well, but stable. These changes in brands has been infinitely more de-stabilizing than my k cuts, which is what I meant to say. But I taper at a very slow rate. of course unlike our cuts where we can control how much were tapering, these brand changes could be changing our dose by 20%. I know my nervous system can’t handle cuts beyond a few percent at a time. And it could just be I’m going to have a much harder time tapering L than k (which hasn’t been easy). 

Edited March 1 by [Pa...]

[[Ma...]]

I know you’re looking for answers, but please don’t get caught up in ‘group think’ from 1 site or another.

Kindling is a theory. Does it happen? Probably, but that does not mean that is what you are or will experience. That is not a predictor for your future.

I believe once you go back to your original brand you will stabilize. Stabilize in a matter of weeks. And that is all you need to focus on.

If you can’t handle cuts by a few percent then try 1%. Trial and error as you listen to your body.

[[ns...]]

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

So sorry to hear this. Did you reinstate, or is it due to dosing?

Hi Padgee,

Thank u.

I was rapidly forced tapered 3.3 yrs ago, then off and on a few pills here and there. Then last April went back on my regular dose of lorazepam. After about 3 months, I realized they were making sick. I began having more anxiety than before and then these pills actually started giving me more symptoms, like when I was forced tapered Which was a beast withdrawal.  

After reading the description of kindling I panicked and applied it to myself. I think I had a paradoxical reaction to lorazepam as I am unable to take anything since my forced taper.  Lorazepam was the only thing i could take for a short time, and actually I think they really never helped much looking back to April. 

Idk if its kindling  but my symptoms are similar. I just know that I had to taper, each dose gives me horrible symptoms, I never stablize and I have no quality of life since.

I push through thinking this was the way it is while tapering and withdrawal but recently learned that most people can at least take showers, clean their house, cook etc.

If not for my husband I could not take care of myself. 

I'm trying to taper as quickly as possible as I think this medication is making me sicker, hurting my body and brain.

I've only gone down hill since tapering but the alternative is to jump.  I missed a dose during the night and I was more miserable,  which I didn't think was possible.

So I'm looking into alternatives, possibly valuim however I wasn't able to tolerate it or clonazepam in the past.

Thanks for asking,  didn't mean such a long response. 

Take care

Ns

[[Pa...]]

12 hours ago, [[M...] said:

I know you’re looking for answers, but please don’t get caught up in ‘group think’ from 1 site or another.

Kindling is a theory. Does it happen? Probably, but that does not mean that is what you are or will experience. That is not a predictor for your future.

I believe once you go back to your original brand you will stabilize. Stabilize in a matter of weeks. And that is all you need to focus on.

If you can’t handle cuts by a few percent then try 1%. Trial and error as you listen to your body.

Thank you for your reassurances. I found out I may not be able to return to brand Lyrica. There are supply issues. I’ve definitely listened to my body, and have done a very slow taper with K. It’s been ok, but it’s on hold indefinitely with the L debacle. 

[[Pa...]]

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

Hi Padgee,

Thank u.

I was rapidly forced tapered 3.3 yrs ago, then off and on a few pills here and there. Then last April went back on my regular dose of lorazepam. After about 3 months, I realized they were making sick. I began having more anxiety than before and then these pills actually started giving me more symptoms, like when I was forced tapered Which was a beast withdrawal.  

After reading the description of kindling I panicked and applied it to myself. I think I had a paradoxical reaction to lorazepam as I am unable to take anything since my forced taper.  Lorazepam was the only thing i could take for a short time, and actually I think they really never helped much looking back to April. 

Idk if its kindling  but my symptoms are similar. I just know that I had to taper, each dose gives me horrible symptoms, I never stablize and I have no quality of life since.

I push through thinking this was the way it is while tapering and withdrawal but recently learned that most people can at least take showers, clean their house, cook etc.

If not for my husband I could not take care of myself. 

I'm trying to taper as quickly as possible as I think this medication is making me sicker, hurting my body and brain.

I've only gone down hill since tapering but the alternative is to jump.  I missed a dose during the night and I was more miserable,  which I didn't think was possible.

So I'm looking into alternatives, possibly valuim however I wasn't able to tolerate it or clonazepam in the past.

Thanks for asking,  didn't mean such a long response. 

Take care

Ns

Nsindy,

I can’t imagine a forced taper. It’s hard enough pushing through on our own time table, Nvmd another’s.

It’s good you have your husband for support. 

Were you like this pre benzo? If not,  once you recover and are healed, you will have your physical abilities back.But I am  sorry you are struggling so right now. 

[[ns...]]

1 minute ago, [[P...] said:

Nsindy,

I can’t imagine a forced taper. It’s hard enough pushing through on our own time table, Nvmd another’s.

It’s good you have your husband for support. 

Were you like this pre benzo? If not,  once you recover and are healed, you will have your physical abilities back.But I am  sorry you are struggling so right now. 

Hi Padgee, Thank u. 

I was an independent active person but had a hysterectomy yrs ago that threw me. This started a trail of stress and illness but I was still pretty active. I have an acoustic neuroma small brain tumor but had radiation to shrink it, I will say that prior to that I was prescribed lorazepam. I was loosing my hearing in one ear and any noise sounded like a scratchy record on loud! Gave me anxiety and that's what led me to lorazepam. 

I was given an ssri after hysterectomy as I couldn't have hormone replacement therapy but stayed on the ssri too long. Took Gabapentin and pain meds for trigeminal neuralgia and sciatica after a fall for yrs. So I've had pain issues and taking an ssri that I didn't need wasn't so good but I got by ok really. I tapered off everything, I did it over yrs and very slowly, I had no problems from those tapers.

Just life really, gallbladder surgery and then a big out of state move. That's when a PA took me off of lorazepam and my whole world changed.

So the answer to your question is that it's a long answer, but I really was active before benzo, just not as active as I used to be. There's a lot to say but it's not necessary, but I appreciate you asking.

Are u taper yourself?

How long and what do u take?

How are u doing with your taper?

I'm sorry I didn't read your history here

Ns

[[Pa...]]

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

Hi Padgee, Thank u. 

I was an independent active person but had a hysterectomy yrs ago that threw me. This started a trail of stress and illness but I was still pretty active. I have an acoustic neuroma small brain tumor but had radiation to shrink it, I will say that prior to that I was prescribed lorazepam. I was loosing my hearing in one ear and any noise sounded like a scratchy record on loud! Gave me anxiety and that's what led me to lorazepam. 

I was given an ssri after hysterectomy as I couldn't have hormone replacement therapy but stayed on the ssri too long. Took Gabapentin and pain meds for trigeminal neuralgia and sciatica after a fall for yrs. So I've had pain issues and taking an ssri that I didn't need wasn't so good but I got by ok really. I tapered off everything, I did it over yrs and very slowly, I had no problems from those tapers.

Just life really, gallbladder surgery and then a big out of state move. That's when a PA took me off of lorazepam and my whole world changed.

So the answer to your question is that it's a long answer, but I really was active before benzo, just not as active as I used to be. There's a lot to say but it's not necessary, but I appreciate you asking.

Are u taper yourself?

How long and what do u take?

How are u doing with your taper?

I'm sorry I didn't read your history here

Ns

NS,

I am sorry you have had so many pain and health issues, along with surgeries. The tumor sounds like a very scary situation. It certainly complicates this process to have serious health issues to address, as you have.
 

Has the hearing situation improved? I can understand how that would create tremendous anxiety.
 

Thank you for asking about my history. I still don’t know how to navigate this site, and didn’t realize we could view that.
 

I have a history of health and pain issues and ended up on several medications to treat them - including Lyrica and K to treat spinal pain and muscle rigidity. Before my spinal injuries I was a happy, healthy active mom and wife. 
 

I need surgery…but am in no condition to get it. I have a genetic condition that makes healing tough/poor prognosis. Like you, I also suffer from trigiminal neuralgia, but the atypical kind. I’ve been homebound for sometime, partially bedbound from taper. Prior to the change in my L brand, my K taper (3 years in), while slow, was ok. I even had a short period last summer where I was able to do a bit more than pre - taper. A honeymoon season. I guess they call that a window. 

 It just came to the point where I was suffering from what I believe to be interdose wd. Maybe tolerance. I don’t know. That, along with the stress of wondering if physicians will continue to want to write benzo scripts (my physician will retire soon), brand shortages, etc led me to start tapering K 3 years ago. I had to retire from my job to do it. I was only working limited hours anyway. Now I may need to pivot and get off L first. Which for me feels harder as my ATN is uncontrolled, and flaring with change in L brands. 
 

I have a wonderful partner - without his support I don’t know that I’d make it. He has his own health issues, and I worry for him.  The thought of having to do this alone terrifies me, as like you, I am unable to do many basic activities of daily living.  I try to take just take one day at a time. Some days that feels like an accomplishment. I’m hoping that better days are ahead. I wish for better days for you too. 💕

P

 

[[ns...]]

6 hours ago, [[P...] said:

NS,

I am sorry you have had so many pain and health issues, along with surgeries. The tumor sounds like a very scary situation. It certainly complicates this process to have serious health issues to address, as you have.
 

Has the hearing situation improved? I can understand how that would create tremendous anxiety.
 

Thank you for asking about my history. I still don’t know how to navigate this site, and didn’t realize we could view that.
 

I have a history of health and pain issues and ended up on several medications to treat them - including Lyrica and K to treat spinal pain and muscle rigidity. Before my spinal injuries I was a happy, healthy active mom and wife. 
 

I need surgery…but am in no condition to get it. I have a genetic condition that makes healing tough/poor prognosis. Like you, I also suffer from trigiminal neuralgia, but the atypical kind. I’ve been homebound for sometime, partially bedbound from taper. Prior to the change in my L brand, my K taper (3 years in), while slow, was ok. I even had a short period last summer where I was able to do a bit more than pre - taper. A honeymoon season. I guess they call that a window. 

 It just came to the point where I was suffering from what I believe to be interdose wd. Maybe tolerance. I don’t know. That, along with the stress of wondering if physicians will continue to want to write benzo scripts (my physician will retire soon), brand shortages, etc led me to start tapering K 3 years ago. I had to retire from my job to do it. I was only working limited hours anyway. Now I may need to pivot and get off L first. Which for me feels harder as my ATN is uncontrolled, and flaring with change in L brands. 
 

I have a wonderful partner - without his support I don’t know that I’d make it. He has his own health issues, and I worry for him.  The thought of having to do this alone terrifies me, as like you, I am unable to do many basic activities of daily living.  I try to take just take one day at a time. Some days that feels like an accomplishment. I’m hoping that better days are ahead. I wish for better days for you too. 💕

P

Padgee, thank u for asking and for sharing. 

The tumor isn't a big deal really. It's very small and slow growing. Radiation kept it from growing as well. The tumor does complicate things though with my hearing. It added to the anxiety and with withdrawal there us tinnitus. Different than most, the tinnitus is more of an electrical digital sound in that ear for which I am deaf, and I don't understand how I can hear anything in that ear but it is painful to hear any sound in that ear because it's distorted and very loud. The other ear is normal tinnitus so I wear ear plugs when it bothers me too much.

TN is gone, praise God! 

I think Radiation did that! 

It sounds like your in a lot of pain and I'm so sorry. Withdrawal hasn't come at a convenient time for anyone but I know we'll get thru this!

The Radiation is painless, u might want to look into this, gamma knife! It could stop the TN pain in its tracks! 

I do my best not to focus on the negative or the symptoms. It's tough some days like I've had the past few days. I loose myself in it at times, but manage to pull myself out and change my focus away from symptoms. It helps so much when we can do this so we can see more clearly where we are vs where we need to take our mind. Try not to symptom focus ok, practice gratitude even in the midst of this, you'll be surprised what gratitude can do for our mental and physical health. 

I'm grateful for having the moments to talk to u and so many here who experience the pain of withdrawal but who also push thru everyday. Hearing they're stories of how they push thru it and how many recover! We will get there, I'm sure of this! Change your mind Change your focus Padgee, be thankful grateful and push on to healing!

Take care 

Ns