6 Months Benzo Free -- 9 ER visits, 2 hospitalizations and six-figures later...

I am six months off 1.5 mg of Ativan, taken as prescribed for two years. 9 ER visits in seven months and two week-long hospital stays later... six figures searching for solutions, and I am still on Benzo Buddies.

 

I wish I had other news to report, but every day feels like 100 days, and sometimes I wonder how I will make it. Only because I am tapering another med given for sleep when I was in WD has created sxs worse than acute.

 

I hope to God to be able to breathe my own breath again one day, not think about symptoms every minute, eat what I want again, write a success story, and move on from this hellscape.

I'm 8 months off CT clonozepam and 4 months off one dose Ativan from ER visit. I can relate to what your saying. I have horrible breathing issues, dizziness, and it seems symptoms have ramped up in the past month.

Hang in there. I know it's tough. You've come this far, you can do it. 

Tapering this other medication is the issue now. Honestly, I would be almost healed if doctors had let me be. How was I so stupid to take another medication. I had no idea if could harm me so much.

My favorite quote, for you, Rebecca:

 

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”

 

-Haruki Murakami, Kafka on the Shore

 

Hold on, you can do this!

Thank you. I am losing hope. I never thought I would become an online horror story. But that’s what’s happened.

Rebecca, do you mind if I ask what your treatment is when you go to the ER? I know I had to go once after the CT for a severe migraine and they ended up giving me severe akathisia, but I refused benzos because I didn’t want to kindle. It was an antihistamine that destroyed me.

I have gone for various reasons mainly pain. Pain meds at times even though I didn’t want to take anything. No benzos. Had acute distonic reaction so given Benadryl last time.

I'm looking at your sig. Gee, where have I seen this before. The #prescribedharm community on Twitter.

 

-2017-2022: Off and on different drugs trying to "fix treatment-resistant depression" I did not have.

 

They either put you on poison medication that has side effects, or rip you off, and you have withdrawal. Then they decide that you have something you never had, nor do you have, and push more poison medication on you.

 

Just like me being given Klonopin for an anxiety disorder I never had. I learned the truth from my long-term (12+ years) endocrinologist. The doctor KNEW I had hypomagnesemia, my endo said they should have known it causes symptoms similar to anxiety/panic. Indeed, every time I had a mag infusion, I felt great, only to crash 3 - 4 weeks later. I never, ever, fit the criteria for generalized anxiety disorder. I requested therapy, I had pills pushed at me. I wish I never went to seek help after my mother's death, when I was reduced to eating only oatmeal, until I couldn't. Worst mistake I ever made. My endo has been supportive, she was flabbergasted at what was done to me.

 

BB member Cocodot coined the phrase "medical mismanagement" She too, was misdiagnosed and given poison medication.

 

It's the 21st century, and psychiatric medicine is even more barbaric than ever. I'm tired of dealing with useless doctors.  I've fired 7 practitioners in the past 5 years. I figured out what caused my hypomagnesemia, wasn't listened to or told I was wrong. Found my own cure, an Orphan Drug. Found a doctor to help me get it, fired another who said I was foolish to get an unapproved medication. I had to explain what FDA Orphan Drug status meant, to her. Got it, fixed my hypomagnesemia. All my random panic/anxiety symptoms left too. Endo was right. They never left despite the Klonopin, genius psychiatric resident decided to up my dose.

 

What happened to you, and to so many others, should not be happening! I no longer trust doctors. I no longer trust medications. Doctors wonder why patients use Dr. Google and Dr. Bing. Dr. Bing helped me find the fix to my hypomagnesemia problem. Dr. Bing is helping me research my benzo issue. I'm just  at this point.

 

I called 911 on several occasions, but once they check me over, I sign a refusal to go to the ER. I keep telling my benzo lying brain, "It's the benzos, stupid".

 

You have to somehow reach deep inside of you, and pull out that inner strength. It's there. Even if you don't think you have it.

 

Ketamine

 

Was this to help with PAWS? Some BB members have tried it, mixed results. There's a company called MindBloom that sends you a kit to try this at home.

 

It sucks feeling so  that you find it hard to fight to survive another day. I pray during my meditation every day for healing and help for myself and fellow BB members. I'm praying for you.

 

 

 

 

 

 

   

I did not do ketamine in PAWS. I would be terrified to try it.

I did not do ketamine in PAWS. I would be terrified to try it.

 

I guess it was to treat the depression you never had. One of the things MindBloom provides it for. From what I've read from those who tried ketamine for PAWS/protracted, it didn't produce what they had hoped. I don't blame you for feeling terrified. I wouldn't blame you for being terrified of trying anything. There are a few BB members trying alternative treatments that are in PAWS or Protracted w/d. So far, no magic bullet. 

 

I'm so sorry you've been treated so horribly, and you are suffering so much. There are people on the post acute section that understand, they have been, or still are, where you are. You'll find a lot of support there. Rant, scream, cry, vent.

 

Praying that you turn a corner soon. 

 

 

Thanks for the citation, Benzolottie. I was in cortisone withdrawal. It was also very obvious. They knew or should have known that. I went to therapy, that's where they pushed the sleeping meds. I said I was uncomfortable with sleeping meds. They talked in on me anyway and I was very easily influenced and impulsive because of the withdrawal. I specifically asked if it was non habit forming. The GP lost her mind and just prescribed it. 25 yo. Jusy tinnitus and all from cortisone withdrawal. I should have tried another therapist. I really regret contacting them in the first place. I checked with the psychiatrist and halcion was wrong but rivotril was safe. I would have been allowed to continue therapy there without referencing my symptoms or rivotril. There are some lunatics out there. I was the most clear minded and reasonable and thoughtful person before cortisone. I even had good effect from acupuncture and craniosacral therapy before. Now they don't help anymore. What a disaster. All because they didn't find it normal I wasn't sleeping well for 6 - 7 weeks. I wanted to try a safe thing but nothing more. I wanted help and encouragement with sleep hygiene. That's what CBT is for anyway. But I shouldn't have fought for my sleep. I got put on drugs. We were so stupid. I had almost figured out I was in withdrawal. I even talked to neuromodulation guys and regret not trying that instead. Way less side effects than medication and therapy that's for sure. Now the damage is worse and how I can help myself is less. And besides sleeping I now haven't even napped or relaxed in half a year. Ridiculous.

Thanks for the citation, Benzolottie.

 

It's just so apropos. I shared the "medical mismanagement" comment to the #prescribed harm community on Twitter, stating that a BB member coined the phrase. Many were in agreement that it sums up what happened to so many.

 

 

I was in cortisone withdrawal. It was also very obvious. They knew or should have known that.

 

 

Many knew or should have known that cutting off a patient cold turkey is not only cruel, but dangerous. Yet this happened to Rebecca, and so many others. And it keeps on happening, despite everything out there that is known about benzos and z-drugs. My pharmacist knows more than the doctors. She called me one day, she knows I have been tapering. She says that she has had more and more people come in with scripts for benzos that are beyond two weeks. She counsels them about the risks. She warns them about how hard withdrawal is. She is baffled at how many doctors are writing prescriptions with refills. She says very few patients listen to her. They put way too much trust in the doctors. 

 

As someone with adrenal insufficiency, who was on long-term dexamethasone use, and had my adrenals somehow produce normal output, my endo was very careful with weaning me off the dex. Medi-dose packs of cortisone given here in the USA, are designed to do that. The pills in the pack quickly ramp you up, hold you at a dose for so many days, and the subsequent pills have gradual dose reductions to wean you off. The pills are blister packed on a sheet or card, labelled "Day 1", "Day 2", etc. 

 

I got put on drugs. We were so stupid.

 

We weren't informed, because our doctors were/are idiots. I have dealt with more idiocy in medicine, I just fire the idiots until I find the good ones. My only constant the past 12 years has been my endo, she's one of the good ones. A lot of us were vulnerable, not stupid. We believed our incompetent doctors. And they failed us. I was planning on suing mine, talked to two law firms. But, I needed my medical records to file an affidavit with the intent to sue. My state has a weird court system. Medical system that oversees much of the hospitals and outpatient care, cannot find them. The practice itself denied I was ever a patient there (I saved the phone message they left me as evidence), though I later requested, and received, the records of the resident treating me there for medication management). They closed my case after 120 days. I had already filed a federal HIPPA complaint, and told them I did. I am following up with a complaint to the state regulatory agency, and the DEA at the federal level (because benzos are controlled substances and both the state and the feds require clinical notes showing a thorough exam, which the provider did not do, and a record of prescriptions, be kept). I learned over the weekend from one of the US legal websites, that I can now sue the medical system. A woman in NY state is doing just that. I'll wait until the complaints go through the process. The DOJ may choose to sue on my behalf. I won't have to prove my prescribing doctor committed malpractice. Instead, I only need to prove they denied me of my civil rights, and deprived me of the right to sue, due to having no records. I have proof I saw the original prescribing doctor.

 

 

Please show some support to Rebecca, she could use moral support. 

Where I live most doctors do inform their patients extensively and they know not to take more than one every so many months max. So that really sucks. And it's not prescribed with refills but I had a bottle of liquid and no guidance and took for 12 days. Many people had hormonal issues or things that could have been helped eith DECENT therapists. Too bad I had bad judge of character in the moment. Also, our pharmacist did warn about halcion that it was addicitve and I was too young. And they didn't explain more. Or doctors don't prrscribe it necessatily but then also don't share why not. But then for rivotril it was another pharmacist.

 

Yes it's not a cure at all obviously but it's very much worse than the disease.

Dear Rebecca, please hang in there! You are very strong! You've got this! I know you used nad+ while getting off fast, would it be possible to help you heal more quickly now too? We don't have access here so I don't know.

Not sure. I've thought about it. There's no evidence of it working or interactions with other medications.