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I REALLY NEED SOME ANSWERS....cannot live like this any longer


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I'm at 7 1/2 months off .5 clonazepam taken as directed daily for 20 years.  I was in tolerance for a year and a half before I ct'd.  I have been unfunctional and bedridden for two years now.  My whole body is shutting down.  I can't even touch my skin without having extreme pain.  Cognitive function has not improved...getting worse.  The tinnitus is getting worse every day.  I have to have the volume on loud on the t.v. to try to drown it out. 

 

The looping thoughts and constant phrases from a song go through my head all day long.  The dp/dr is worsening I'm existing in an alternate universe) and I haven't been able to even go sit outside anymore (I used to go out for just a couple minutes a few times a day). My vision is so bad that I cannot even look at my cellphone for more than a couple minutes at a time.  The last time I was out of my house at all was 2 weeks ago.  I went for a drive with my husband, which was excruciating. The only time I'm out of bed is to go lay on the couch in pain for a few hours each night so I can try to watch t.v. with my husband (we haven't slept in the same bed for over 2 years, let alone have any sexual intimacy).  I have to constantly twirl my hair or pick at myself because of the extreme anxiety.  My heart races and my skin burns.  I am not sweating as severely as I once was, but the body burning is so bad.

 

My brain thinks of something random and then all of a sudden it is gone and a few seconds later I cannot remember what the thought was.  I have no contact with anyone...not even on the phone.  This has been going on for 2 years.  The phone gives me extreme anxiety. Trying to be around people has become non-existent too.

 

This has taken a toll on my relationships with my kids....non-existent now, my husband, the rest of my family and my friends.

 

I ask for God to let me die in my sleep.  Is there anyone out there who has been affected as much as I have and gotten any better?  How long do I have to exist in hell like this? 

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I'm so sorry for your suffering, may I ask a question?  You said this has been going on for 2 years but you're only 7 1/2 months off Clonazepam, was it tolerance withdrawal that started this for you then?
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[69...]

Pamster - this is an excerpt from her initial post.  Almost explains the two-year thing.

 

 

0.5 mg. clonazepam nightly starting in year 2000.

Many different anti-depressants given to me for chronic daily migraine management. Elavil, Nortriptilyne, Lexapro, wellbutrin, sertraline, effexor, paxil, cymbalta, plus about 15 more that I cannot remember the names of.

About 25 different migraine meds throughout the years, the last being Amovig shots which I took from July, 2018-November 2018.  While taking the Aimovig shots, I started getting dp/dr, depression, major insomnia, anxiety, etc. (this was the start of tolerance withdrawals that made me non-functioning).

Cold turkeyed from clonazepam by an in-patient unit in February, 2019. Reinstated one month later, then cold-turkeyed again in February, 2020. Reinstated for 1 month, with no improvement (kindled now). Cold-turkeyed for good since March, 2020.

Currently taking 50 mg. Trazadone for sleep. (If I take the Trazadone, I usually have about 4 hours broken sleep. If I don't take it I DO NOT sleep at all.

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[69...]

I'm really sorry that you're suffering.  Are you doing anything or taking anything to try to deal with the symptoms?  Are you seeing a therapist (I found therapy during my withdrawal to be very useful).

 

I'm glad the sweats have calmed down.  I had really bad sweating too, and was really glad when that ended.  Have any other symptoms settled down?

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Hey there Longing,

I'm so sorry! I was poly drugged a lot too, but not as long as you.

When I Rapid/CTed I was nonfunctional for months and in a wheelchair.

So, you are taking trazadone 50mg right now and getting 4 hours of sleep? Has your doc tried increasing that to see if it helps a bit more? Im not recommending more drugs, but since you are already on it you could ask?

What is the biggest symptom that is actually keeping you bedridden?

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Thanks for adding some additional information to your post and thank you badsocref as well, I hope you don't mind longing but I took the liberty of putting the information you provided in your initial post into your signature so it's easier to know where you're at in your journey.

 

I know you're miserable but I feel it's important that you try to get out of the house like you used to.  When I was at my worst I couldn't drive but I managed to take my dog over to a nearby church in the evening and I would just sit on the steps of an empty doorway.  This was a way to challenge myself to keep moving but also to get a brief reprieve from the prison walls I'd erected for myself in my own home. 

 

This is a battle and in order to win it you have to keep fighting for the life you had and the life you will have when you make it past this. 

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Perth22 writes:  "I would say reinstate but it looks like you already tried that. I'm sorry I'm going through similar too."

 

Reinstate at 7.5 months out????  :idiot:

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Pamster:

 

Yes, I was in tolerance withdrawals for a year and a half before I found out what was going on.  It wasn't until I happened across Lisa Ling's special on the Benzo Crises last October that I found out what I was going through.

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Southern Belle:

 

I have so many symptoms (almost every one that the Ashton Manual) lists.  The only thing that has really improved was the chronic diarrhea that I had for years.  I would go 20x a day and it was mostly yellow mucous (sorry for the TMI).  That has gone away for the most part.  The extreme dripping sweating has improved as well as the burning skin.  But I still have the burning skin almost every day, just not as severe.

 

The extreme dp/dr and pain and not being able to be in reality are my worst symptoms....although many others are just as bad.  My vision has been so terribly affected that I cannot see clearly at all.  Everything is cloudy, blurry, double and I have flashing and black spots and am extremely sensitive to light.

 

I can't complete a whole sentence and when I do try to talk to my husband, the words I want to say don't come to me or I cannot find the right words.  The looping, constant rubbish that goes through my brain drives me insane.  It just won't stop.  I have to have the t.v. on just to try to block it, even though I cannot follow programming.  I have tried to read, but I cann't comprehend what I am reading and I forget what I have just read.

 

I am taking Tylenol 3 for severe migraines I've had since I was 27 years old.  I am now 56.  It doesn't hardly touch my body pain, it just takes the edge off the migraine for a while.

 

I so want to be able to just be able to shower and feel normal again.  I have gained an extreme amount of weight (where I was never heavy before) and my looks have deteriorated so badly that I don't even recognize myself in the mirror and haven't for a year and a half now.

 

I am not on any supplements other than a prenatal vitamin I started a few weeks ago.  I tried L-theanine and cbd oil but it ramped me up even worse.  My neurologist wanted to put me on gabapentin and/or clonodine and I see for some, the gabapentin has helped but for others they advise not to use it. 

 

Do you have any advice for me?  I am completely and utterly devasted!

:-[ :-[

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Hey there,

I understand you are a complicated case of many drugs, but just wondering why they CTed you from clonazepam? And they put you right back on, then  CTed again? And now for good on March 2020 right? Dang, yeah I would expect your symptoms to bad.....But there are many people here who have done it, and made it through!

People who were on way longer than me and still made to the other side of CT. So....what we do know is that you can survive it!! There is hope!

My acute was very much the same symptoms, although only a bit of DR for me, and for me the nerve pain was excruciating, and legit could not walk or lift my limbs...hence being bedridden.

To be honest, I did end up taking a bit of amitrip for the nerve pain. Because I was non functional, and it did allow me to start moving again. But I did indeed have to force myself to move with legs that felt like they were full of novacaine. You have to. Our bodies are meant to move. Yes, they have to ABLE to move first, but then you gotta force it a bit.

So I'm not sure if your body may need a bit more time? Or if you may think you need something for the pain so that you can at least move and take a shower? I know how that is because I had to be bathed by loved ones. Ugh.

Really, it will be up to you and your doctor to discuss and figure that out(hopefully a good one). Because there will be some that say taking another drug is bad, and some will say it helped. In the end, I think most of us agree that drugs harmed us all, so it is always a tough call!!!

But just so you know that you are not alone, there are others here too,  and you can make it! And you can have your life again!

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I would say reinstate

 

PERTH!!!! Read her posts. She doesn't need this kind of half-a**ed advice from you.

 

Be responsible for a change!

 

I thought you were going to the "psych ward". No? You decided to stay and give other suffering souls the benefit of your wisdom? Lucky them. Sheesh.

 

:nono:

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[40...]

I would say reinstate

 

PERTH!!!! Read her posts. She doesn't need this kind of half-a**ed advice from you.

 

Be responsible for a change!

 

I thought you were going to the "psych ward". No? You decided to stay and give other suffering souls the benefit of your wisdom? Lucky them. Sheesh.

 

:nono:

 

You literally just took a portion of my whole comment and fabricated it into something so you could write this pointless comment.  Do you work for CNN?

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[40...]

Perth22 writes:  "I would say reinstate but it looks like you already tried that. I'm sorry I'm going through similar too."

 

Reinstate at 7.5 months out????  :idiot: WOW, REALLY!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Yes. She is literally saying she can't go on any longer. MANY people reinstate or go on other drugs over time when they realize how fear-mongering and brainwashing these groups are.  Some of you don't even realize how bad withdrawals can be.

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[40...]
I hate when people heal within a year and claim they had the worst withdrawals.  Some of you are utterly clueless.  None of these posts will get posted anyway because I am being censored.
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I would say reinstate

 

PERTH!!!! Read her posts. She doesn't need this kind of half-a**ed advice from you.

 

Be responsible for a change!

 

I thought you were going to the "psych ward". No? You decided to stay and give other suffering souls the benefit of your wisdom? Lucky them. Sheesh.

 

:nono:

 

Katz,

 

I agree with perth on this one, you only quoted a portion of his post, my take on it was he was trying to offer support by just showing up on her thread but seeing she'd already tried reinstatement, I got the impression he was saying it probably didn't look like a good idea.

 

I would say reinstate but it looks like you already tried that. I'm sorry I'm going through similar too.

 

And ThEwAy2, everyone has this magic amount of time in mind when we talk about reinstatement but I'm not sure what that number is based on, I don't think we can predict what reinstatement will look like for anyone at anytime, I've seen some work, and others not and I don't think we know what determines that. 

 

Pamster

 

 

 

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When I feel like that. I try to take a walk. The thoughts are awful I know. I read affirmations. Utube meditations. Plus you need to accept what u are feeling are sx and you will get better. Try to keep your anxiety down, it makes the sx worse. Im sorry you feel this way. I had most of those sx too. I feel pretty good today.  Last week I felt like you. Hanfg on.
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I would say reinstate

 

PERTH!!!! Read her posts. She doesn't need this kind of half-a**ed advice from you.

 

Be responsible for a change!

 

I thought you were going to the "psych ward". No? You decided to stay and give other suffering souls the benefit of your wisdom? Lucky them. Sheesh.

 

:nono:

 

Katz,

 

I agree with perth on this one, you only quoted a portion of his post, my take on it was he was trying to offer support by just showing up on her thread but seeing she'd already tried reinstatement, I got the impression he was saying it probably didn't look like a good idea.

 

I would say reinstate but it looks like you already tried that. I'm sorry I'm going through similar too.

 

And ThEwAy2, everyone has this magic amount of time in mind when we talk about reinstatement but I'm not sure what that number is based on, I don't think we can predict what reinstatement will look like for anyone at anytime, I've seen some work, and others not and I don't think we know what determines that. 

 

Pamster

 

OK, so if I would have reinstated at 7.5 months off, I would have LOST 7.5 months of healing.  I started to get some major windows around month 9 and 10 off and was mostly healed by month 15 off and completely healed by month 24.  I never would have had that success if I reinstated at 7.5 months off and believe me I thought about reinstating all the time. IMO telling someone to reinstate at 7.5 months off is reckless, careless and dangerous not to mention "prescriptive" and isn't that a violation of forum rules?  And yes, I had a brutal WD for about 9-10 months that slowly got better after that so I know how bad WD can be.  In our "fast food" culture, we want everything fixed immediately and that's what led me to Benzos if the first place. I had a few off nights of sleep but instead of "toughing" it out, I went down the Benzo road because my PCP said they were "safe and effective."  I stayed on them too long and at too high of a dose and paid a heavy price in the form of a BRUTAL WD experience. 

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Perth22 writes:  "I would say reinstate but it looks like you already tried that. I'm sorry I'm going through similar too."

 

Reinstate at 7.5 months out????  :idiot: WOW, REALLY!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Yes. She is literally saying she can't go on any longer. MANY people reinstate or go on other drugs over time when they realize how fear-mongering and brainwashing these groups are.  Some of you don't even realize how bad withdrawals can be.

 

Do you realize how many people got to the point during their healing/recovery experience that they didn't think they could go on any longer either? I would say the majority on this forum IMO?  She's not a unique or special case, hundreds if not thousands of others journeyed down that same path, didn't think they could make it and eventually recovered without reinstating.  Many of us on this forum have been there and done that and finally healed.  We (I) am speaking from that experience and trying to offer hope for healing without drugs.  A window could be right around the corner?

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[a4...]

Do you realize how many people got to the point during their healing/recovery experience that they didn't think they could go on any longer either? I would say the majority on this forum IMO?  She's not a unique or special case, hundreds if not thousands of others journeyed down that same path, didn't think they could make it and eventually recovered without reinstating.  Many of us on this forum have been there and done that and finally healed.  We (I) am speaking from that experience and trying to offer hope for healing without drugs.  A window could be right around the corner?

Cold-turkey is not only a miserable experience, it's also dangerous. It can leave long-term, or even permanent damage. IMHO anyone who can reinstate to do a slow taper should do so.

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A lot of your symptoms sound like an antidepressant withdrawal. I'm not saying you're not also in benzo withdrawal, but reinstating may not even help if your issues are caused by antidepressants. I hope you find relief, I really do.
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Do you realize how many people got to the point during their healing/recovery experience that they didn't think they could go on any longer either? I would say the majority on this forum IMO?  She's not a unique or special case, hundreds if not thousands of others journeyed down that same path, didn't think they could make it and eventually recovered without reinstating.  Many of us on this forum have been there and done that and finally healed.  We (I) am speaking from that experience and trying to offer hope for healing without drugs.  A window could be right around the corner?

Cold-turkey is not only a miserable experience, it's also dangerous. It can leave long-term, or even permanent damage. IMHO anyone who can reinstate to do a slow taper should do so.

 

RIGHT........ :idiot:  I did a CT based on advice from my PCP.  Yes, a CT is dangerous for a possible seizure only and is not advised, but there is ZERO evidence to show that a CT can cause "permanent damage."  Please STOP posturing! The Benzos causes the damage, not CT'ing off of them.  The symptoms and "perceived" damage are the body's reaction to no longer having the drug.  This thread wasn't about the dangers of a CT, but whether or not a person should reinstate at 7.5 months off.

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[a4...]

RIGHT........ :idiot:  I did a CT based on advice from my PCP.  Yes, a CT is dangerous for a possible seizure only and is not advised, but there is ZERO evidence to show that a CT can cause "permanent damage."  Please STOP posturing! The Benzos causes the damage, not CT'ing off of them.  The symptoms and "perceived" damage are the body's reaction to no longer having the drug.  This thread wasn't about the dangers of a CT, but whether or not a person should reinstate at 7.5 months off.

No, it is cold-turkeying off of them that causes the damage. Overabrubt cessation causes glutamate excitoxicity. There are people on the forum who actually have brain lesions. And it's not posturing, I wish I had reinstated when back when I had the chance (and I had the chance). There're far too many voices on this forum championing cold-turkey, and I wish somebody told me to reinstate back when I asked whether to do so. Yes, and body's reaction is glutamate excitoxicity. I don't know when people should reinstate, but some people don't heal with time. They get into a sort of positive-feedback cascade of excitoxicity and get worse and worse as the time goes by. That's why it's advised to reinstate as soon as possible, not because there's some magic amount of time when it's supposed to work. Unless benzos turn toxic/paradoxical reinstatement works at any time with high enough dose.

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I see no reason to return to benzodiazepines after the picture of brain damage has developed and 10 months have passed.

I mean myself.

Who thinks what?

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RIGHT........ :idiot:  I did a CT based on advice from my PCP.  Yes, a CT is dangerous for a possible seizure only and is not advised, but there is ZERO evidence to show that a CT can cause "permanent damage."  Please STOP posturing! The Benzos causes the damage, not CT'ing off of them.  The symptoms and "perceived" damage are the body's reaction to no longer having the drug.  This thread wasn't about the dangers of a CT, but whether or not a person should reinstate at 7.5 months off.

No, it is cold-turkeying off of them that causes the damage. Overabrubt cessation causes glutamate excitoxicity. There are people on the forum who actually have brain lesions. And it's not posturing, I wish I had reinstated when back when I had the chance (and I had the chance). There're far too many voices on this forum championing cold-turkey, and I wish somebody told me to reinstate back when I asked whether to do so. Yes, and body's reaction is glutamate excitoxicity. I don't know when people should reinstate, but some people don't heal with time. They get into a sort of positive-feedback cascade of excitoxicity and get worse and worse as the time goes by. That's why it's advised to reinstate as soon as possible, not because there's some magic amount of time when it's supposed to work. Unless benzos turn toxic/paradoxical reinstatement works at any time with high enough dose.

 

This would be a great discussion on the Chewing the Fat board.  :thumbsup:

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