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*SCARED* - Being pressured to restart meds while withdrawing


[sc...]

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My mom is upset that I haven’t reinstated Xanax XR and Zoloft after quitting cold turkey on 7/27. Finding a new provider has been a disaster. Found a few NPs but I’m worried about their experience in general and especially w benzo. Current Dr will not discuss meds at all - either reinstate or find new Dr basically. 
 

Mom says I need to follow instructions and trust Dr but he doesn’t even think I’m withdrawing. Also said you “can’t” have long term withdrawal from benzos. Don’t even know want to say. I feel very uncomfortable in his care bc i cant discuss anything. I understand why bc I was non compliant they have the right. 
 

If I reinstate and almost same dose (minus the drop to 1mg for Xanax) I’m scared of kindling and/or other consequences. I will need to find another provider anyway bc current one will not do taper. 
 

I’m scared and panicking. Mom is upset, Dr is upset I don’t blame them. Wish someone would make up my mind for me but that’s not how it works. Can’t think straight right now every decision seems bad. 
 

If someone could guide me I’d be so grateful. 

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What was the reason for your cold turkey and what are your current symptoms? Have you felt any improvements in symptoms the last month or have you had any windows?

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Stopped bc I panicked after finding out they could be bad for your ears (I have severe noise sensitivity and had mold tinnitus). Now I have 100x worse tinnitus. 
 

Symptoms started as nausea/vomiting, now it’s severe tinnitus, nerve pain in ears/teeth, neuropathy in extremeities (numbness tingling hot/cold sensation), feeling out of it 24/7, cannot concentrate, frequent urination, diarrhea, eye blurriness/floaters. 
 

Symptoms have not improved and more keep coming 

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Was told on Reddit I essentially have brain damage. Another person said I’m at risk for PAWS bc I stopped cold turkey. We’re just being honest but it scared me. No excuse i KNEW better. 

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@[sc...] I'm not judging your decision to stop CT and neither should you. Some people have no choice because their doctor cut them off or they run out of pills or they didn't know any better (I don't think you fully understood how terrible the withdrawal would be going CT). The reason I was asking was just to determine if your original doctor stopped prescribing and if you are now struggling with a new doctor because you refer to a "current" doctor. But it sounds like it's the same doctor. 

You don't have brain damage. Your brain might have an injury and be in pain but it will heal. Prof Ashton said:

Quote

One reassuring finding from many clinical studies is that eventual success in withdrawal is not affected by duration of use, dosage or type of benzodiazepine, rate of withdrawal, severity of symptoms, psychiatric diagnosis, or previous attempts at withdrawal. Thus from almost any starting point, the motivated long-term user can proceed in good heart.

It sounds like you're dealing with a lot of stress related to this situation. Stress has an enormous impact on our symptoms and can make it much worse. Whether or not you reinstate is something we just cannot determine for you - it's too personal. I fully understand it's not a decision to make lightly and you have raised some very valid concerns. We can talk you through some of these, but ultimately you are the one that has to live with the decision - whichever way it goes. It sounds to me you have a lot of pressure from others to reinstate but I get the feeling you're not totally onboard yourself? 

The best information I've seen on this subject is contained in this thread

 

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Yes, my mom is extremely upset I haven’t reinstated and we fight about it almost daily. I’m having to see a nurse practitioner instead of a psychiatrist bc I can’t get in anywhere. I’m very concerned about how much training she has and if she knows the details of benzos and my mom just came in and basically solidified my concern now I’m even more worried. She basically said so you would rather start all over with a new person that isn’t a doctor and doesn’t have as much training. I tried but drs are booked out and I had to find telehealth bc I can’t drive and avoid car rides if possible due to ear injury. 
 

I don’t know what to do. Everything feels like the wrong decision. My mom barely speaks to me so I’m doing this by myself but I wouldn’t have to do it at all if I had just stayed on meds. I had a chance to get better from my original condition (hyperacusis and tinnitus) now my tinnitus is unbearable and I have the whole new condition of withdrawal. Don’t know if I can handle all these at one could barely handle it before stopping meds. 
 

Do you think seeing a NP is a bad idea? Could try to find psychiatrist but that delays things even further. 
 

Apologies for the rant. Things have not been good between my mom and I and it’s escalating. My fault. Would go somewhere for awhile but can’t. I’m destroying my moms life and I’m trapped. We’re both doomed if something doesn’t change.

 

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Let’s look at your two options:

1.      You do not reinstate. Your current state is probably the worst it will get. It could take a couple of months before you feel improvement (or less). Generally full recovery takes 1-2 years.

2.      You reinstate. Your symptoms could a) get better b) stay the same c) get worse. You still have to taper. Tapering can take 1-2 years depending on your dose. Then you have to add another 1-2 years of recovery on top of that. Also keep in mind tapering is not a walk in the park. Depending on how you react to reinstatement, you have to deal with those type of symptoms for the rest of your taper.

If I look at these options, I know for me personally, I would be very weary to risk increasing my symptoms and then still have to taper down. After a month of being off, I think you’ve done the hard work in suffering through the worst. The other issue is, you’ve also stopped the Zoloft. So you don’t know how much of your symptoms is related to which drug, and if you reinstate whether you should reinstate both and whether your body will stabilize like it was before you quit both.

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@[sc...] I just wanted to add that I left my psychiatrist who prescribed benzos for me and would not support my taper, and found an NP. She actually DID know about benzos -- more than the psychiatrist did -- and was very compassionate and quite reasonable. I took the Ashton Manual to her, she read it and agreed with my proposed taper. When I had to go slower,  she always made sure I had  enough valium to taper. As a result of my good experience with her, I have fond thoughts of NPs. She made my slow taper possible . . . said as long as the general direction was down, she didn't care how slowly I went. 

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@[or...] So glad you found someone who understands. I’m hoping she does too. Kicking myself for not trying to get in somewhere sooner. Was trying to find telehealrh so my mom didn’t have to drive me & I could about noise exposure fell car but now waiting so long was probably WAY worse than a car ride. Hyperacusis has made me paranoid and I’ve made so many terrible decisions bc of it. CT being the worst one. I’m physically and mentally exhausted as you know way more than me I’m sorry for making it sound like I’m the only one when I’ve just started and it was my fault. I just wish I could undo everyone but my actions have consequences. Don think I have the strength to get through it. 
 

Missed by baby brother’s wedding shower yesterday. Family and friends, I miss them so much it hurts. Only in person contact for 5 months is my mom, drs, and brother a few times. Barely leave my room. Lost so much weight my clothes don’t fit. And this was before withdrawal. The hell has only begun. 

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I broke up with my psychiatrist and was being prescribed my Klonopin by my oncologist. Then I moved, got a new oncologist, and now my palliative care doctor and her NP are prescribing my Klonopin, but I told them what my tapering plan was going to be, and they went along with it. (I know I'm lucky.) The thing is, I came up with my own plan after successfully tapering off of Klonopin and several other medications with the help of BB in 2015. 

It looks like your CT was just a month ago. I'm sorry you had to go through all of that. I'm not sure what I would do in the same situation, but I would probably not reinstate. But I also don't have hyperacusis - although, I have tinnitus, and it got worse when I started my taper, but it sort of comes and goes. Mostly I just ignore it.

Please don't panic about the things that might happen. It's very easy to read about all the horrible possible side effects and potential withdrawal symptoms but that doesn't mean they will happen to you. And please, please, don't be so hard on yourself. I truly believe everyone makes the best decision they can wherever they happen to be at that time. You made your best decision. Noone here is going to judge you. That is one of the lovely things about BB - they will help you from where you are, right now. 

Being sensitive to noise is a real thing. I can only imagine, and I'm so sorry you have to deal with that. I'm sorry about your isolation, too. There are lots of forums, here, which hopefully may help. 

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On 23/08/2023 at 21:50, [[s...] said:

My mom is upset that I haven’t reinstated Xanax XR and Zoloft after quitting cold turkey on 7/27. Finding a new provider has been a disaster. Found a few NPs but I’m worried about their experience in general and especially w benzo. Current Dr will not discuss meds at all - either reinstate or find new Dr basically. 
 

Mom says I need to follow instructions and trust Dr but he doesn’t even think I’m withdrawing. Also said you “can’t” have long term withdrawal from benzos. Don’t even know want to say. I feel very uncomfortable in his care bc i cant discuss anything. I understand why bc I was non compliant they have the right. 
 

If I reinstate and almost same dose (minus the drop to 1mg for Xanax) I’m scared of kindling and/or other consequences. I will need to find another provider anyway bc current one will not do taper. 
 

I’m scared and panicking. Mom is upset, Dr is upset I don’t blame them. Wish someone would make up my mind for me but that’s not how it works. Can’t think straight right now every decision seems bad. 
 

If someone could guide me I’d be so grateful. 

@[sc...]

I would reinstate both meds at small doses. You and your Mother are going through Hell. It is not necessary to suffer like this.

If you could work out some compromise with your pdoc. That you do RI at small doses and see how you feel.

Zoloft helped me taper the BZD painlessly back in 2021. It was a really small dose, like 25 mg first and 12.5 mg afterwards. It took me two months, but I was also on other calming non-addictive meds which I took in tiny doses.

Zoloft is a powerful calming AD. Maybe it would make sense to reinstate diazepam instead of alprazolam, since you've endured a whole month without alprazolam. And it's the worst possible BZD, very addictive.

According to Benzodiazepine Equivalence Table, alprazolam has a half-life of 6-12 hrs, so it must cause terrible interdose WD sxs. 0.5 mg of alprazolam equals 10 mg of diazepam. Which has a half-life of 20-100 hrs, and makes you feel very little interdose WD. This is all to be discussed with your doctor.

I wish I could take away your suffering❤️

I also have terrible hyperacusis and used to have tinnitus. Gingko biloba is a good natural remedy for tinnitus. Also vitamin B12, B6, B2, B1 and magnesium. Again, to be discussed with your medical provider.

You could taper diazepam according to Ashton Manual or slower, and Zoloft would be your crutch. It helped me immensely to taper clorazepate, although I hated the sxs.

Be careful with different online communities, this one is safe enough. Hang around here. First of all, you need to work with a qualified pdoc and a therapist. Must finish, my Kitty demands my complete attention. 

Take care:hug:

Paula

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It’s hard finding a doctor who really  gets this, particularly the more serious cases of BIND.  Some say they do and they don’t.  How to treat it is largely a mystery. 
 

Here is a question for you: how does your doctor think going back on a benzo and Zoloft will help all those physical symptoms?  What is his plan?  To put you back on and do a slow taper?  I would get answers to this stuff before even considering going back on.  The fact your doctor doesn’t think Xanax can create a long term withdrawal means he’s not the right man for the job.  It’s a crapshoot finding a provider that even sort of gets it.  And to be honest, no provider knows how this is going to go.  The results are so different from individual to individual. 
 

Continuing, a couple years ago I reinstated after being off for months.  Things did not go back to how they were.  A lot of the symptoms did quiet down after reinstating but were still there.  I even did a much longer and more thoughtful taper and the symptoms were a lot worse the 2nd time around.  A lot worse.  I don’t want to scare you but kindling can be very real and is a possibility.  I’m now 11 months off another attempt and much worse off than I was before. 
 

If you want to pacify your family, considering going back on a low dose of Zoloft is an option.  It may help some.  My doctor, who authored the latest BIND research papers, thinks anticonvulsants like Trileptal, Depakote and lamictal should be the preferred medication to treat benzo withdrawal.  I currently take a very low dose of Depakote and it does help some symptoms and calm my system a bit.  Antidepressants generally aren’t effective in his experience.  So that is something to consider.  Starting at low doses is always preferable giving the heightened sensitivity of the nervous system during BIND.  

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Did everything wrong maybe I should have just done what my psych. Dr told me. Im scared guys I’m in too deep INSANE ear sensitivity and nerve issues 

I have nobody to help me set this up mom is upset w me we barely talk 

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@[Je...] Thank you so much. Would you say your tinnitus is manageable? I’m scared that mine will stay bad forever - it went from a 2 to a 7-9. I’m also getting ear zaps which apparently might be something called gaze-evoked tinnitus which I’ve never heard of. When I move my eyes I sometimes get a shock in my ears & my T will go up to 10/10 for a millisecond. Never thought T could be a symptom of withdrawal. Ironically I CT’d because I panicked about making my H/T worse. My fault for not researching. Had a decent chance of going back to functional level and I’m scared I ruined that. 
 

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Hi @[Es...] , thanks so much for your help. Can reinstating/tapering SSRIs cause kindling like benzos? 
 

I’m so sorry you have hyperacusis & had T. I sympathize for sure. Did you get them from meds? Also, would you say your hyperacusis is at a “functional” level. Currently housebound and terrified that withdrawal destroyed any chances of returning to functional level. I did the CT out of fear regarding H/T worsening. Ironically it made me worse than ever. Panic never leads to good outcomes it seems. That and my lack of common sense…

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@[sc...]

No problem, always glad to try and help, but I'm not a medical professional, remember. I don't think reinstating ADs, either SSRIs or SNRIs can cause kindling.

I was suggesting the minimal possible dose to start with, wait about month and see how you feel. Then decide what to do next.

My hyperacusis is caused by anxiety disorder and OCD. Idk the cause of tinnitus, but it has subsided lately. I was using the methods I described in my previous post.

Also visited otolaryngologist and had my ear examed and rinsed. Sometimes it helps to put an earplug in the ear where you have tinnitus. Before putting in the earplug (a soft one) I use a mixture of olive oil, almond oil, jojoba oil, paraffin and vitamin E.

This mixture is marketed in my country under the name AkusTone. It is a spray for the ears and you can see it has many positive reviews, although not in English, I'm sorry. Try finding something similar in your country. It was recommended to me by a doctor years ago.

I'm using these earplugs, they are very good.You can also listen to some relaxation sounds on YouTube through your earbuds. The key is not to obsess about a symptom, but try to find a solution.

The more you want the symptom to go away, the harder it is to get rid of it. "What you resist, persists", as a Swiss psychiatrist Carl Jung once said. 

Take care:hug:

Paula

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

@[Je...] Thank you so much. Would you say your tinnitus is manageable? I’m scared that mine will stay bad forever - it went from a 2 to a 7-9. I’m also getting ear zaps which apparently might be something called gaze-evoked tinnitus which I’ve never heard of. When I move my eyes I sometimes get a shock in my ears & my T will go up to 10/10 for a millisecond. Never thought T could be a symptom of withdrawal. Ironically I CT’d because I panicked about making my H/T worse. My fault for not researching. Had a decent chance of going back to functional level and I’m scared I ruined that. 
 

I @[sc...] I absolutely don't think you ruined your chance to get back to a functional level. I think it will just take time. And, yes, I think my tinnitus is totally manageable. It definitely spikes sometimes, but then it calms back down. Like I said, I mostly ignore it. If I "listen" for it, it is ALWAYS there, so I just don't listen! 

I love the quote that @[Es...] posted! "What you resist, persists"   ~ Swiss psychiatrist Carl Jung. That is SO true!

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

@[Je...]

I'm a philosophy graduate. Head full of quotes, hahaha❤️

@[Es...] I LOVE it! I LOVE quotes! I've got tons bouncing around in my head. One of my favs is "Sentiment without action is the ruin of the soul." ~ Edward Paul Abbey (He was a philosopher ... before being labeled as an environmental activist - which, of course, he also was, but a philosopher first.)

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@[dj...] I wish I could have stayed w my psychiatrist. I booked an appt w/ a NP not realizing they’re 3x the cost. I’m confused how someone with an MD is less expensive & I don’t think I can stay w/ the new provider at that pricing. Should have paid more attention & look around more. If the NP declines discussing options I’m not sure what to do. 
 

I will definitely ask her about possibly reinstating Zoloft. To confirm, your Dr. said that ADs weren’t effective with helping benzo withdrawal? I’m scared to add new meds bc of my hyperacusus/tinnitus but I’ll definitely ask. I’m so sorry about your experience with reinstating. 

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