Desperate for LWS advice and hope pls 😢

[[Ho...]]

Hello All, I am new. Apologies if I am posting on the wrong group. I’ve just found this site and am desperately seeking some advice, support, or just hope that I will heal. I’m a 42 yr old divorced professional. I have been on Clonazepam (.5-1 mg) daily for anxiety and sleep for 10 years. I was never advised of the dangers of long term use and when I learned I tried to taper myself 3 years ago. Bad idea. I got down to .25mg a day and was very sick and had to resume taking it daily at higher doses again. Out of desperation to get off this horrible medication, I finally sought a treatment facility earlier this year in Feb where I could taper in a controlled environment with medical supervision. I inadvertently landed in a rehab  (unbenknownst to me at the time), where I was negligently fast tapered in 5 days with Valium. I suffered PAWS for 3 weeks and took seizure medication and thought that was the worst of it. I was wrong.  They gave me low dose buspar (5mg 3 times a day) and 25 mg of Seroquel nightly along with 100 mg of trazadone nightly which helped with sleep for about 6 weeks. I’ve come back home now and owing to the awful side effects of Seroquel, I’ve stopped taking all the meds and my system is now in a free for all. I feel like I’m dying.  It’s technically been 2 months since I’ve stopped the Clonazepam but the long term withdrawal as you all likely know has reared its head and is excruciating. I don’t know what to do! I have debilitating morning anxiety daily with panic attacks, dizziness, inability to concentrate, tinnitus, memory is shot, cognitive function is definitely impaired, my rebound anxiety is through the roof and even after not sleeping for days, my body refuses to sleep every single night, I’m lucky if I get 20 min before I have night terror and am jolted back up. I haven’t slept naturally without any medication for about 2 months consistently. I have finally found 2 new psychiatrists to “help” but they have very different philosophies and I don’t know which way to go and I’m skeptical and scared to make this worse.
 

One believes I should take an SSRI but those meds never helped me in the past with anxiety and they take 4 weeks to adjust in your system. what do I do for the short term? I am reluctant to go down that path and have the anxiety and insomnia get worse or be left untreated. This path seems lazy and I’m not convinced SSRIs are the right call for Benzo withdrawal. Should that fail I’ll have to try a new me and I’m so fearful of taking a polypharmacy approach that makes this worse. The chronic insomnia is the most debilitating of my symptoms and I’ve been taking 50-100 mg of Hydroxyzine some nights but that’s hit or miss and I wake up more dizzy and spacey after 3-4 hours not to mention it’s drying my system and I don’t want to depend on an antihistamine forever. The only sure fire way to sleep is Ambien (which I have) but I know the risks of getting addicted and dependent to that as well.

The other psychiatrist I saw who doesn’t believe in long term medication and favors supplements long term, which I like, refuses to address the short them crisis. This doc has recommended I restart Ambien 10 mg daily starting today  only to taper by 1mg over the course of several months. Is this a bad idea? . He’s the first person who seems to understand what I’m experiencing but his approach eschews all medication and seems like it may prolong my suffering. He’s trying to help me stabilize sleep since I’m hallucinating now but I’m fearful only addressing sleep to the exclusion of the rebound anxiety as well putting me on another pill that my body will rely on will make this worse long term.

can anyone who has recovered please advise what worked for you or of stories of long term sufferers who healed over time and how- whether through use of adjustment/transition medication, or supplements? I have bought so many natural remedies - passionflower tincture, magnesium, taurine, ashwaganda, chamomile and the list goes on. They seem ineffective for RIGHT NOW  given the severe withdrawal symptoms I’m experiencing but I’m scared of the pharmaceuticals. I’m wondering if it’s advisable to start on another daily medication in parallel with the supplements to manage the long term anxiety but I have no clue what to do about the sleep and am disheartened and disappointed by how few psychiatrists understand what’s happening to me and what to do to bring some relief or offer a treatment plan that makes sense and has been clinically effective. 

This feels like a catch 22. I’m miserable and quickly losing hope that I will never be the same person again and will never recover. I’ve been on disability from work for 2 months and have 1 month to go before I have to return to work and I can barely speak or function normally. I’m fearful I will have to quit my job if I can’t stabilize my system, will blow through savings in medical expenses, and will be left suffering and unable to take care of myself. I feel alone and the depression is coming with a vengeance. Can anyone offer some support, encouragement, recommendations or all of the above? Or simply … yes/no to SSRIs? How did you all regain sleep and how long did it take? 
 

please help! Any help is much appreciated and needed 

Thank you in advance 

Edited April 21 by [Ho...]

[[Re...]]

Hello @[Ho...], Welcome to BenzoBuddies,

I am truly sorry to hear that you are so unwell. My heart goes out to you! Unfortunately, this is not uncommon after long term benzodiazepine use. Your story is so similar to mine, I dropped 4,5 mg Xanax in 3 months. I can assure you that it does get better and better with time! 

The recommended taper rate after long term use is 5-10 % of your previous dose every 2-3 weeks. General information about tapering is availabile here. 

What you are experiencing now is your central nervous system being overly sensitized. Every new medication, stress, stimulants like coffee, cigarettes, even tea is too much for it to handle in my personal experience. Antidepressants may or may not help during benzodiazepine withdrawal, people's experiences are so different. In my experience, there is no medication that clearly helps everyone during benzodiazepine withdrawal. 

The massive majority of people, however, do recover given enough time and they are out there living life, we have loads of Success Stories. I myself have gotten better after that horror dose and "taper like thing" I did. This is doable

Please let us know how we can support you! 

Hang in there! 

[[Ho...]]

Thank you so very much for the encouragement RR and for sharing your personal story and experience. It gives me hope to know that I can heal in time. 
 

I especially appreciate the guidance about the recommended taper rate for long term users. If I am to understand that correctly, and I will of course confirm this in consultation with my medical practitioner, it is “safe” and advisable to go back onto the medication with a view to re-tapering it? In other words I’ve been so fearful to reintroduce it to my system again but it seems that to successfully rebuild the central nervous system, it could be helpful to reintegrate it in some way, shape, or form?  I would like to present this approach to my psychiatrist and I really appreciate learning from the shared experiences of others and will continue exploring/reading success stories. I know I can beat this! I simply want to avoid pitfalls and prefer learning through others’ experiences as my trial and error journey continues. 
 

many many thanks 😊 

[[Re...]]

It is self explanatory @[Ho...]. Reinstatement might work, yes, I wonder how much time has passed since you took your last dose of clonazepam? About two months? 

Some switch to diazepam, as it is easier to manage during their taper because of it's pharmacological properties. 0.5 mg clonazepam roughly equals 10 mg diazepam. You can see, that when you reach lower doses, smaller reductions can be managed more precisely and gradually. Diazepam also has a way longer half life, too. The Ashton manual follows this method. 

However, some people do not tolerate this switch, only their original benzodiazepine. Taper from these is absolutely possible, too, our members often invest in a jewelry precision scale, water tapering, manufacturers oral solution, etc. 

This reinstatement does not always completely work and it might require some time, as well as further dose adjustments, it is very important to mention this. The shock from the original dose reduction might result in some symptoms that remain, even if one takes the medication again. These, too, slowly get better and better and eventually resolve on their own. 

I would advise you to be careful about taking Ambien, it is likely to complicate recovery, you yourself mention this. It is not the same medication, but works on the same receptors, which can really complicate our journeys. 

We have a wonderful Taper Strategies section of the Forum, where our members will try to help you with tapering methods or calculations. 

Please, be reassured that we do get better, however it might be time consuming. Whatever you decide, we are here to support you when you need us. 

Take care, 

RR

[[Ho...]]

Thank you for the thorough information. This is most encouraging. I’m going to refer to the tapering forums as you suggest and the caution against Ambien is very well appreciated and validates my gut instinct. 

 

[[Ho...]]

Apologies, I forgot to clarify that my last daily dosage of Clonazepam was Feb 12th, followed by a 5 day Valium taper. So yes, about 2 months ago. 
 

I did however take the Clonazepam 2 weeks ago @ .25 mg before understanding what was happening and haven’t taken it again since. 

I’m struggling to find a professional who will engage in a slow taper or who understand this process. Doctors are not historically fond of patients telling them what to do and I already sense defensiveness from my new providers, which is disheartening given how vulnerable I am and how much I need them and can’t alienate them. I’m trying to strike a balance and navigate the process delicately to get support I need but also educate my providers. Any tips from those who have experienced the same challenges with doctors are also appreciated 

[[he...]]

Hey there….. this sucks!!! I had a similar experience. After the 6 month mark things started to get better. Focusing on diet and exercise and rest helped a lot. I tried so many different things and I’m not sure which helped most. Some supplements did make it worse, please refer to the Aston manual so you could see what to avoid. You could always regaled the ambien but if you have the financial ability to take time off of work and work this out it’d be best. I also recommend talking to someone in your life and telling them what’s going on. This can be a very isolating experience and you need someone you can trust on your side. You can even share this group with them. 
Also, I did a lot of YouTube vagus nerve work. Working on your vagus nerve will help you to calm. Just know you are out of the woods as far ans risk of seizures and though this is uncomfortable you will not die from it.

stay away from alcohol, nicotine, caffeine, any type of stimulants even chocolate. 
 

you got this!!! Remember slow and steady wins the race. 

[[he...]]

I’d like to add that that was a very fast taper. I was on benzodiazepines for a long time 12 years. Last on klonopin I tapered for 7 months before getting off. Your taper was so quick. 

[[he...]]

4 hours ago, [[H...] said:

Apologies, I forgot to clarify that my last daily dosage of Clonazepam was Feb 12th, followed by a 5 day Valium taper. So yes, about 2 months ago. 
 

I did however take the Clonazepam 2 weeks ago @ .25 mg before understanding what was happening and haven’t taken it again since. 

I’m struggling to find a professional who will engage in a slow taper or who understand this process. Doctors are not historically fond of patients telling them what to do and I already sense defensiveness from my new providers, which is disheartening given how vulnerable I am and how much I need them and can’t alienate them. I’m trying to strike a balance and navigate the process delicately to get support I need but also educate my providers. Any tips from those who have experienced the same challenges with doctors are also appreciated 

 
have you had this conversation with your primary care doctor? 

[[Ho...]]

@[he...] thank you so so much for your input and your support. I  feel less alone and encouraged to know others have (unfortunately) suffered the same journey and recovered particularly a sufferer of more than 10 years of benzo dependency. Some days I wonder if I can ever come back from this but in my heart I know I can.   I wish I knew now what I did about the fast taper! Had no idea long term withdrawal could happen and was laser focused on  the first month and purging the medicine from my system. 

Unfortunately I have now exhausted my time off from work so may need to rely on prescription sleep aids but  I’m hesitant to introduce Ambien as yet another medication I will need to taper from in the future. Did you find any non-habit forming sleep aids or supplements that helped with chronic insomnia? Any thoughts on hydroxyzine? One of my docs suggested I take that at night but seems risky for other reasons. Curious if anyone has positive or negative experiences with that one. It’s unbelievable how tired my body is after 4 consecutive days of not sleeping and yet still can’t close the eyes at night for more than 20 min at a time. 

I am still able to exercise as long as I can sleep but sometimes I’m shaking too much to get myself to the gym. I do thankfully have a very supportive family and excellent therapist to talk to as I go through the withdrawal journey. They don’t always understand the nuances but they can see how much I’m struggling and are being positive and willing me forward, reminding me that I will heal. 7 months is really commendable and encouraging. As much as I don’t want to touch the benzos, I think I have to reintroduce the klonopin or other benzo like diazepam to wane off of. My psychiatrist appears to be open to it and works with a compounding pharmacy so I think that’s positive though I had to suggest it first. 

I plan to loop my PCP into this process this week but he is sometimes old fashioned not  keen to have to “learn” from his patient. Any suggestions of ways to introduce the withdrawal syndrome in a non intimidating way to a medical professional? Terms I should stay away from? Or perhaps there is non threatening literature geared to doctors that I can  print and bring to the appointment? I don’t think he is familiar with benzo dependency. I need all my doctors on my team but I know psychiatric medications are not their speciality and I’m fearful about trying to educate them without turning them off on treating me. No doctor likes a “know it all patient” but I’m learning in this process we have to advocate for ourselves.  teaching him about the Ashton Manual may not be well received but perhaps there is a more gentle way to get them on board with the methods that have worked for others, like the slow taper. 

Am I completely out of the woods for seizure risk after 2 months? I was wondering if I engage in a new taper whether to ask for seizure meds once again, though they fried my brain during the fast taper. Sometimes my heartbeat when I’m battling insomnia is so fast I worry that other physical or cardiovascular complications may present. Without sleep I worry everything is going haywire beyond the central system. 

Many many thanks for the kindness and resources 

[[ca...]]

Hi hopekeeper99, I read your story and I'm kind of experiencing the same. The only difference is that I'm still tapering    .5mg of Kloni.   I have debilitating anxiety and severe Insomnia. I do take mirtazapine 15mg for sleep but it only gives 2-3 interrupted hours feeling weird on my head in yhe morning.

How are you doing today after your post?  

My anxiety cripples me to the point that I have no energy.

[[Cr...]]

On 21/04/2024 at 16:17, [[H...] said:

It’s unbelievable how tired my body is after 4 consecutive days of not sleeping and yet still can’t close the eyes at night for more than 20 min at a time. 

A fellow clonazepam sufferer here. Not getting sleep is just awful because sleep is a temporary escape from your symptoms and not getting any sleep seems to make all of our other symptoms feel worse.

The morning anxiety will get better as time goes by. I remember the horrible morning anxiety that forced me out of bed in the mornings and sent me vomiting due to the overload of cortisol/adrenaline. I walked so much to burn away that nervous energy that I lost a ton of weight in just a month.

The Ambien does not sound like a good idea and may not only stall your progress but further set you back. If you could find a way to get some sleep without psyche meds, I would choose that route. Only psyche meds that may help with sleep that don't act on Gaba (benzo receptors) are low doses of Remeron (Mirtazapine, AD) and Seroquil (Quetiapine, Antipsychotic). Both of those carry their own issues and side effects though. Avoid if you can.

This whole process is indeed terrifying, but you will recover. While it may take awhile, you won't be experiencing the symptoms as fiercely as you are now through this whole process. They will gradually lessen, sometimes worsen (waves), and sometimes almost fade away (windows).

If you are stressing about ssri's, I was able to successfully get on one at the 14th month mark due to severe depression that came from a wave that hit while I was also working and taking med classes. In hindsight I wish I hadn't because now I have to contend with coming off, but the withdrawal hasn't been as bad as it was from benzos.

From the sounds of it, if you could just manage to get a decent night's sleep I think a lot of your stress and anxiety may lesson a little. There are lots of med-free sleep tips on this board you may want to look into. If you need to pass time while unable to sleep, I suggest you read through the huge selection of success stories. Many written by people in circumstances similar to you. Don't spend too much time on this site though, try to distract yourself the best you can.

We will all be here to support you through to the finish line. Your benzo use was your Catepillar phase. Your recovery (current) is the Cocoon phase. Eventually you will reach the Butterfly phase and attain total freedom from the havoc wrought by these awful drugs.

Edited May 18 by [Cr...]

[[Le...]]

there was a lot to read here but i would like to make sure it was mentioned that if off for a long time like you have been reinstating usually means you are still sick from whatever happens in WD and doped on top of it. long term disability and riding it out is what most people have to do.