Can't do this another day -- please help me -- I've become a worst case

[[Re...]]

I am being told to slow taper this Seroquel they gave me for sleep during benzo wd. Taking this was a bigger mistake than taking the benzo. Benzo wd was easier.

 

It has now gotten unmanageable. I am being told by other members to continue to taper slowly. But at this rate it will take me 4.5 years to get off of 28mg.

 

I don't leave my home. I walk miles on the porch. I wake up feeling like my body is full of air in excruciating pain. Unable to work or function. I cannot go on like this. I feel like there is no way out. B6 didn't work. Propranolol depresses my breathing for some reason.

 

There has to be something I can do to get this medication out of my system without causing further harm. I tried splitting the dose and it made things worse for me. I couldn't see straight trying that and it didn't cover the Aka in any way.

 

I have hired a forensic scientist who specializes in drug harm and gene analysis to analyze me and help me look at medication options. It's the only thing I can think to do.

 

Physically, mentally and emotionally I cannot go on like this. There has to be SOMETHING I can do to get off of this medication without further harm. I can't CT it. Can someone offer any ideas, please?

[[Be...]]

I wish I had an answer. AP's are as bad as benzos. I was quickly reduced from clonazepam by a terrible psychiatrist, and prescribed Olanzapine for any w/d I might have. I ended up reinstating, and leaving. My new provider was a PsychNP and she asked what I was put on Olanzapine for? I told her. She asked how long, it wasn't quite a month. She told me to simply stop it, the dose was 2.5 mg, it was safe to stop being a small dose and short-term use. Being on BB, I realize  dodged a bullet. That NP knew more than the MD who prescribed it.

 

I wished there was some evidence of NAD+ working for Psych meds other than benzos. It isn't even a perfect solution for benzos. I've seen on Twitter in the #prescribedharm community what AP's can do.

 

I'm sorry that you are suffering so much. And I'm sorry that I don't have any answers. I hate not having solutions, I go research to find them. I know my former PsychNP told me how bad AP's were, and she was baffled that doctors would rip people off one med, and give them one just as bad. She said that getting off AP's can be as difficult as getting off benzos. Dr Roger McFillan, a psychologist on Twitter, points out the hypocrisy of bad psychiatry. Give an equally bad med to patients removed from another. Prescribe a med, give another to treat side effects, when that one causes problems, prescribe another.

 

Do you have any way of maybe seeing a Mayo Clinic doctor? They seem to be quite knowledgeable, and quite a few BB members go to Mayo clinic.

 

Just want to offer you a  

[[Re...]]

I wish I had an answer. AP's are as bad as benzos. I was quickly reduced from clonazepam by a terrible psychiatrist, and prescribed Olanzapine for any w/d I might have. I ended up reinstating, and leaving. My new provider was a PsychNP and she asked what I was put on Olanzapine for? I told her. She asked how long, it wasn't quite a month. She told me to simply stop it, the dose was 2.5 mg, it was safe to stop being a small dose and short-term use. Being on BB, I realize  dodged a bullet. That NP knew more than the MD who prescribed it.

 

I wished there was some evidence of NAD+ working for Psych meds other than benzos. It isn't even a perfect solution for benzos. I've seen on Twitter in the #prescribedharm community what AP's can do.

 

I'm sorry that you are suffering so much. And I'm sorry that I don't have any answers. I hate not having solutions, I go research to find them. I know my former PsychNP told me how bad AP's were, and she was baffled that doctors would rip people off one med, and give them one just as bad. She said that getting off AP's can be as difficult as getting off benzos. Dr Roger McFillan, a psychologist on Twitter, points out the hypocrisy of bad psychiatry. Give an equally bad med to patients removed from another. Prescribe a med, give another to trat side effects, when that one causes problems, prescribe another.

 

Do you have any way of maybe seeing a Mayo Clinic doctor? They seem to be quite knowledgeable, and quite a few BB members go to Mayo clinic.

 

Just want to offer you a  

 

Thank you. I tried to get into the Mayo Clinic and they told me they could not help me. That they were too busy. I am at my wit's end, devastated. I really cannot go on like this. Doctors want to tell you that your wd symptoms are psychosomatic. I’m afraid to even look at more prescribed harm.

[[Be...]]

 

Thank you. I tried to get into the Mayo Clinic and they told me they could not help me. That they were too busy.

 

 

That's a bummer. They are quite benzo-wise, even have a section on their website devoted to benzo w/d, they use Ashton Method.

 

 

Doctors want to tell you that your wd symptoms are psychosomatic.

 

 

I see that a lot in #prescribedharm on Twitter. Denial, gaslighting, some actually troll the patients tweeting. That's why that community exists on Twitter.

 

Maybe you'll get some answers from the forensic scientist. Sorry I couldn't be of much help, but I saw 36 views and no replies to a plea for help.    I'll pray that you get some answers from the scientist, and some relief from your predicament. 

[[Re...]]

I never thought I would become a cautionary tale. My old life was so beautiful. I’m mourning so many losses due to this.

[[Ho...]]

It sounds like you're willing to do just about anything, so I'm wondering if you've tried Johns Hopkins? Physicians always have to put us in some basket, whether it's PAWS, DAWS or Dysautonomia, but now some understand BIND (benzodiazepine-induced neurological disorder).

 

I called Mayo too, because I have a neurologist there. I got to see him but he was not helpful; he's a sleep specialist and an older gentleman. It's the younger doctors who have more openness to pharmaceutical injuries.

 

Just spitballing here, because I feel your pain!! the insensitivity of doctors over our plight makes their advice suspect. We all struggle with trust issues now, even though in a way they can't help it.

 

Years from now there will be an understanding of our predicament, and the hardness of heart we encounter in the medical industry. People will say, "How awful!"  But for us it will be long past. Rebecca 29 may things get better for you very soon!

[[Ha...]]

Is or was the Seroquel causing you problems? It might be too soon for you to come off? Is your Benzo WD ancient history, or do you still have symptoms and sensitive CNS? If the Seroquel wasn't causing any issues stopping your taper might be your best option at the moment. Wait until you're stable before trying again.

 

I don't understand why doctors think they can just mess about with brain chemistry and nothing will happen

[[Ha...]]

Hi Rebecca,

I agree with Having a mare. You are only 7 months off benzos? Many are still having dreadful symptoms at this point, I was certainly. Now, you’ve added Seroquel withdrawal on top of that! No wonder you’re feeling so bad.

You mention that it would take you 4.5 years to get off with a slow taper but does that matter if it allows you to be functional?

If things are so bad, you could even updose the Seroquel to find some relief and then taper from there.

I really feel your desperation Rebecca but I honestly don’t believe there is a magic person or pill out there that can relive your suffering better than your own judgement.

We all grieve our old lives and would do pretty much anything to get back there but it seems that our bodies will recover at their own pace. Time is your friend here.

I have experienced akathesia and it is indeed brutal. Please know that I understand your level of suffering. I’m so sorry. You will be well in the future. The journey to get there is not clear at the moment but you will get there.

Hardy xx

[[le...]]

I do know how you feel, I don’t have akathesia, but have paranoid fear of hurting people every time I leave the house. Started 3 years ago nearly after stopping the AD’s. I make myself go out, but feel physically sick while I am out. Hope you soon get some relief. Even though my symptoms are different I do know how hopeless things can feel. I’ve given up really, of ever having my old life back, but you are fairly recently off benzos so still time for you to recover . I came off the AD’s too quick as felt so awful on them so can understand people advising tapering , you don’t want end up like me years later.xx

[[Re...]]

Hi everyone I hear you on the tapering but I am not stable holding the taper or doing the taper. That is the problem. Seroquel offers me no benefit to stay on it. It doesn’t make me sleep. I pace for miles in the house now. My muscles feel twisted 24/7. This level of suffering isn’t sustainable and there has to be another way.

[[Li...]]

Just checking ….

 

Were you able to get in touch with Chris Paige — the therapist and coach who survived severe akathisia during withdrawal and recently founded The Institute for Akathisia?  Did he have any suggestions?

 

Links:

 

Chris Paige, LCSW

https://www.chrispaigelcsw.com/

 

The Institute for Akathisia

https://akathisiainstitute.org/

[[Re...]]

I’m not trying to be offensive so please don’t take this the wrong way. I’m just not sure what he could offer me. Techniques for more suffering? His own experience staying on Mirt and Seroquel regardless of these meds causing Aka for years and years? I need to fix the problem because it’s dangerous to be in this condition.

[[Li...]]

No worries.  I just wanted to make sure you knew about him and his work.

[[ap...]]

I seriously hope Drug Chemists have their books open 24/7 experimenting on a solution to dampen the withdrawals and get an answer for us to get past this.

 

I seriously am not gonna try anymore- its been 35 years and I cant handle it. Ill remain on Klonopin until I pass-

[[Ha...]]

Rebecca, were you ever stable on the Seroquel? Were you stable on the benzo/seroquel combination? Basically what I’m asking is…….what were you taking when you last felt well?

When did you actually start taking seroquel? i can’t tell from your signature.

Did you have Aka before you started it?

Just trying to see if we can clarify what is causing what? Sorry if this is going over old ground, just trying to understand.

From your last posts I see now why you urgently need to find an answer to your intolerable position.

Outside the box thinking might be necessary here. Feel for you.

Hardy x

[[Ha...]]

You're missing the point Rebecca I think. It's not that it's giving you any relief or benefit, it's the fact that it's not causing you problems. You could be causing yourself more problems by trying to taper a drug that you don't really need to. I understand the desire to be drug free, but there's no need to rush these things. What might seem like an impossible mission now could be a lot easier next year once you've given your body time to adjust to being without a Benzo. Trying to do it all at the same time could be simply too much

[[Ha...]]

That’s exactly what I was trying to establish Having a Mare. It’s psychologically difficult to keep taking a drug if you’re convinced it’s actually CAUSING the terrible symptoms.

Hope we can help you clarify your situation Rebecca.

Hardy x

[[Re...]]

Rebecca, were you ever stable on the Seroquel? Were you stable on the benzo/seroquel combination? Basically what I’m asking is…….what were you taking when you last felt well?

When did you actually start taking seroquel? i can’t tell from your signature.

Did you have Aka before you started it?

Just trying to see if we can clarify what is causing what? Sorry if this is going over old ground, just trying to understand.

From your last posts I see now why you urgently need to find an answer to your intolerable position.

Outside the box thinking might be necessary here. Feel for you.

Hardy x

 

Thanks, Hardy.

 

Were you ever stable on the Seroquel? No

 

Were you stable on the benzo/seroquel combination? I was not on both at once. I was given Seroquel to sleep during benzo wd.

 

I felt like I was going nuts when I was taken off the benzos but had they left me alone, I think I would have been much better by now without adding in this other med.

 

When did you actually start taking seroquel? About two weeks or so after stopping the benzo

 

Did you have Aka before you started it? I believe I have had it this whole time it just has morphed and changed. I believe that might be why I didn't sleep. 

 

Thank you for caring and helping.

[[Re...]]

You're missing the point Rebecca I think. It's not that it's giving you any relief or benefit, it's the fact that it's not causing you problems. You could be causing yourself more problems by trying to taper a drug that you don't really need to. I understand the desire to be drug free, but there's no need to rush these things. What might seem like an impossible mission now could be a lot easier next year once you've given your body time to adjust to being without a Benzo. Trying to do it all at the same time could be simply too much

 

Yes, I have heard this. But I do not stabilize at all ever -- even waiting six weeks between tapering doses. So I could wait three months and still not be stable. The pain is not tolerable for that long. It is not normal pain. It has been excruciating, punishing. Not sure if you had bad physical symptoms. If so I know you know what I mean.

[[Ha...]]

Ok, but let's try to get to the bottom of why things are so bad. I mean are your symptoms from the Benzo and you're making it worse by tampering. You could be blaming the wrong drug.

 

So let's take a step back here. How's the Benzo WD? Was it ok and finished with? Symptom free?

[[Re...]]

The benzo symptoms were different and other than hyperacusis, ear popping, and tinnitus I think everything else is gone. I had none of these biblical symptoms for 6 months after the benzo detox. Only tapering this Seroquel. The problem is they might not go away -- even if I hold. Even if I taper later. I have held for six weeks and nothing changed. I think I would be back to life with minimal symptoms if I had not been put on Seroquel. I am devastated and mourning the loss of my life.

[[Ha...]]

Hi Rebecca.

You say you think you might have had aka the whole time so it might indeed be partially due to the benzo /withdrawal/ recovery process.

Is it the pain or the aka or both which is intolerable?

I’m assuming you do NOT want to take any further new meds?

 

As I see it, these are your options…….

 

Find a decent place to get off Seroquel as an inpatient on the condition that they give you no new meds.

Pros…….you would be supervised and cared for and this might reduce your fear. They might teach you other non drug strategies to control the aka?

Cons……you would be doing exactly the same thing as staying at home but at great cost.

 

Go back on a low dose of benzos, enough to make the aka tolerable…….do a fairly rapid taper of the Seroquel, then taper the benzo at your own rate.

Pros……you would have immediate relief and you might feel back in control.

Cons…..all your hard work of getting off the benzos would have to be repeated. Getting off both will take a while, many months perhaps.

 

Stay as you are, carry on tapering, accept that this is absolute hell but it just has to be survived.

Pros……the drug would be out of your system quicker.

Cons…..many tortuous days ahead with no immediate relief.

 

Try another med.

Pros…..it might work.

Cons…..it might not.

 

Please know that I’m just trying to help you get your thoughts in order. I know how difficult that is when you are exhausted from terror. My sister did a similar thing for me and I was very grateful.

 

Hardy xx

 

 

 

 

 

 

 

[[Re...]]

Hi Rebecca.

You say you think you might have had aka the whole time so it might indeed be partially due to the benzo /withdrawal/ recovery process.

Is it the pain or the aka or both which is intolerable?

I’m assuming you do NOT want to take any further new meds?

 

As I see it, these are your options…….

 

Find a decent place to get off Seroquel as an inpatient on the condition that they give you no new meds.

Pros…….you would be supervised and cared for and this might reduce your fear. They might teach you other non drug strategies to control the aka?

Cons……you would be doing exactly the same thing as staying at home but at great cost.

 

Go back on a low dose of benzos, enough to make the aka tolerable…….do a fairly rapid taper of the Seroquel, then taper the benzo at your own rate.

Pros……you would have immediate relief and you might feel back in control.

Cons…..all your hard work of getting off the benzos would have to be repeated. Getting off both will take a while, many months perhaps.

 

Stay as you are, carry on tapering, accept that this is absolute hell but it just has to be survived.

Pros……the drug would be out of your system quicker.

Cons…..many tortuous days ahead with no immediate relief.

 

Try another med.

Pros…..it might work.

Cons…..it might not.

 

Please know that I’m just trying to help you get your thoughts in order. I know how difficult that is when you are exhausted from terror. My sister did a similar thing for me and I was very grateful.

 

Hardy xx

 

Thank you, Hardy.

 

It is the pain plus the akathisia which is intolerable. If I did not have the akathisia and pain that comes along with it, I could taper at a rate that makes sense for my body.

I do not want to take new meds AND I do not know if it is possible to continue on like this. I will not take another psych med, that I can tell you. And do not want to take a benzo...who knows if that would even work. What if someone reached tolerance quickly then couldn't taper the new drug? Then you are stuck on the benzo and the drug you want to get off of......

[[Ha...]]

Yes, I understand.

 

So can you think of an option that might work?

If you could magic any option into being, what would it look like?

 

Hardy xx

[[Re...]]

CTing the medication and ending this nightmare. But that is not an option. I tried changing the dose doing 4mg am 4mg afternoon 20mg night and the 20mg dose made me feel like I was going to explode. I ended up taking another 8mg that night to get through the night.