Benzo free and 85% healed after 17 months (short time user, really nasty symptoms)

[[Bl...]]

My real name is Simona, I'm 40 years old, I'm from Romania (south-eastern Europe), i am a short time user and probably one of the worst cases here, at least up to a point. I have been on Benzo Buddies since January 2023, i've been tapering for 17 months, i jumped 3 days ago and i can finally say i am 85% healed. I apologize if this is a long post, but I hope that the following detailed information about my experience will help others.

 

Background story

I will make it as short as i can, if you want to know about my full experience you can read my bio and my crying for help here, on BB.

What i can say is that in November 2022 i was rocking back and forth in my small room in a mental hospital, wondering what could have gone wrong in less than one month, how my health changed radically from perfectly healthy to fully broken, mentally, physically and emotionally. No, it is not an episode of a horror movie, but the cruel reality that you all know.

I had no prior experience with benzodiazepines before this episode. My only mistake was to listen to my GP practitioner who, in 2022, prescribed me some Xanax, now and then, to help me cope with my stress and insomnia (lol). I took X for one month, now and then, and not more than 0.25 mg / day. But oh, boy, taking this small dose was the beginning of my horror story.

Shortly after I stopped X, I started feeling more depressed, anxious, agitated, with weird pains all over my body coming and going and some other weird symptoms. Needless to say that me “feeling weird” ruined my trip to Paris and Amsterdam, which I had planned for months. I blamed it on fatigue and stress and i tried to go on with my life.

But in October 2022 I had my first panic attack. I woke up during the night with chest pain, feeling of suffocating, tremors, fluctuating blood pressure and the overwhelming feeling that something was wrong and I was going to die. My partner at that time took me to the emergency room where, after detailed tests, I was diagnosed with generalized anxiety disorder (lol). I was given 10 milligrams of intravenous Valium and sent home with a prescription for Ativan 1 mg /day. The doctor there advised me that after 3 weeks I should go to a neurologist or a psychiatrist to gradually reduce my dose and to establish a treatment plan. I trusted the doctors and I didn't even have the curiosity to read the leaflet to understand that I had been given another benzo.

Instead of feeling better, my panic attacks became more frequent, especially in the morning, and the anxiety was constant, hour by hour, minute by minute. After almost 3 weeks, I made an appointment with a psychologist who, after only 10 minutes of discussion, diagnosed me again with generalized anxiety and told me to reduce 1 mg of Ativan (10 mg of Valium) as follows: day 1  ½ of the pill, day 2 ¼ of the pill, day 3 the last ¼ of the pill. So a 3 day tapering which now I know it's not tapering at all but CT. She also put me on 10 mg of Escitalopram (not sure though about the dose, I have some blank space in my memories about this).

On the second day of following this brilliant plan (read it malpraxis) my body broke: pulse over 150, shaking, feeling like fainting, akathisia (I didn’t know back that the sensation of pacing around non-stop while feeling like ripping your skin has a medical name attached on it), tremors, chest tightness, choking while swallowing, dozen of other symptoms and, my favourite one, my tongue spasming non stop, day and night, not letting me sleep or close my eyes for more than 48 hours. After 2 days with zero sleep, my parents took me to the ER. They run again tests, including a full body MRI which, as you expected, came clean so they all shrugged their shoulders and sent me home with another diagnosis of generalized anxiety.

When I got home, my condition worsened considerably. In a week I couldn't get out of bed, I could walk supported by mom most of the times, I had spasms and I couldn't fully use my left hand which was almost numb.  After another visit to the ER, I decided to admit myself, voluntarily, to a psychiatric hospital, convinced that I had a mental illness that appeared out of the blue (although neither I nor any of my family members had any history). I was scared, broken, sure that I won't make it. On top of this, between two visits at ER, my partner of 4 years decided that it was the perfect time "to take a break" because "the relationship was not working anymore" - as you can guess, I am quoting him  )

At the psychiatric hospital, I underwent a one-hour psychological evaluation, after which it turned out that I do not suffer from any mental illness. However, my doctor put me on 2 mg of Clonazepam, 20 mg of Cinolazepam (mild benzo for sleep, the equivalent of 5-6 mg of Valium) and 50 mg of Luvox (AD). So, in December 2022 I was taking about 45 g of Valium per day, which my doctor considered to be a small dose.

As you can guess, I never fully stabilized and I was discharged without any major improvements. But at least my doctor told me that it's not safe to stay on benzos for too long, so he gave me a reduction scheme which, knowing what I know now, seems totally unrealistic. Basically, I was going to reduce 45 milligrams of Diazepam (Clonazepam + Cinolazepam) in 2 months. But, again, I trusted my doctors and managed to reduce the dose of Clonazepam by half in about 2 months. The biggest mistake of my life: for 2 months I was not able to walk, eat, or remember how to write by hand. I couldn't wash my hair by myself without feeling like dying, so my mother was the one who, for a while, slept next to me and helped me with everything. All this time, my doctor, with whom I kept in touch by phone, told me that I was doing fine and to keep pushing. During all this time I had about 50 symptoms, which I will list at the end of this post.

In January 2023, although I could not fully understand what I was reading, I started my own research on the internet so this is how I landed on BB. I was shocked to read similar stories and I realized that the tapering scheme suggested by my psych was a totally BS, so I started my own tapering. I've learned about half life of a drug, plasma concentration, hyperbolic reduction and many other things that my doctor didn't even bother to tell me about. So, my real tapering journey started in February 2023, guided by people on BB. At that moment I was still at 25 mgs of Valium, after reducing the equivalent of 20 mgs in 2 months.

 

 

BlueLady in Benzo Land. MBenzo

 

When I wrote the first post on BB, I was scared, hopeless and a vegetable. However, the people here were extremely nice and helped me with valuable advice about tapering and how to cope.

I want to say thank you to @[Pa...], @[Je...], @[he...] and many others who answered my posts and guided me.

Here, on BB, I met my benzo buddy, @[Mb...], who literally saved my life at least 3 times. Thousands of miles apart and with a 7-hour time zone difference, we continued to talk daily in the months that followed. He was my real support, more than family or friends: only those who go through something like this know how difficult and challenging this experience is. We promised each other that, the moment we heal, we will see each other face to face. I will try to keep this promise as soon as I am able to fly 12 hours, from Romania to Canada. I owe it to him that I am here now and i can write these lines.

Here is one drawing i made for him, back to back, fighting together this monster.

And here are some lines from a song he sent me, that helped me survive  when I had no hope left. I promised myself that this year I will get a tattoo with the lyrics on my left hand, so that I will never forget that I went through hell and managed to come out on the other side.

But I'm still breathin'
Still speakin', heart still beatin'
Countless nights battlin' with demons
And I'm still here, guess I'm undefeated!

 

 

Tapering Clonazepam – 7 months of hell

As I said, in February 2023 I started my own taper. I had already reduced 20 milligrams of valium in 2 onths. Yet, I still had 25 left and I was in pain. But I decided to make it fast, ride or die, so I went with cutting 15-20% every 2 weeks. I decided to finish with Clonazepam first and then move to the sleeping pill (big mistake, I found out later that Cinolazepam had a short life, so for 2 months I had interdose withdrawal each bloody day, but more about this later).

I bought a jewel scale and i started tapering. What I can say, it was hell all along. Each day waking up in hell, counting the minutes between doses, crying, suffering and wishing that all this would end. A few times I had some sort of windows, but my symptoms were still at 5-6 in my best days.

On the 5th of July 2023 I took my last dose of Clonazepam, but I couldn't celebrate. My parents made me a cake, but I knew that the fight was not over yet. I still had the Cinolazepam to remove, but I was hoping that, since it was only a sleeping pill, it should be easier. I had removed 2 milligrams of Clonazepam (40ish mg of Valium) in 7 months and, although I felt like hell, I survived. What could have gone wrong?

 

 

Tapering Cinolazepam - ...and more hell

Surprisingly, one month after jumping, I started to feel somehow better. I resumed my work (I am a freelance copywriter and graphic designer), I was able to take on some small projects, and I started working in the garden to help my parents. I was 50% recovered so I decided to reduce my AD first. Big mistake, not because of the symptoms (they were minimal and disappeared in a maximum of 7 days. See my bio), but because I realized later that AD was somehow helping me with the WD symptoms.

After cutting ½ of my AD, I started tapering Cinolazepam. I knew it was a short lived benzo, but I was hoping my body would handle it. Well, I was wrong.

After reducing the equivalent of 1 milligram of Valium in one shot, I started to feel worse than while tapering Clonazepam. So back to hell, but this time 100 times worse. One full month I slept only 3-4 hours a night, back to not being able to walk properly, psychosis, and the rest of 40+ symptoms, coming and going.

I only updosed twice, after not being able to sleep for a few nights in a row, and I paid the price: it threw me into 2 months of setback. So my advice is to never updose, unless you have to.

I contacted my psychiatrist again who, although useless, advised me to introduce 300 mg of Gabapentin. The dose was too high, it made me feel lethargic, but at least it alleviated some of the symptoms. As soon as I started to feel better, I gradually reduced Gaba, over the course of 4 months, until I reached 100 mg, the dose I am taking now. I had no major problems reducing Gaba.

It was November 2023, I was in pain again, and I still had to reduce the equivalent of 4 milligrams of Valium. There wasn't much left, but the symptoms made me feel stuck. So I took a leap of faith and decided to switch the remaining Cinolazepam to Valium.

 

 

Crossing to Valium. You can get better while tapering

I had nothing left to lose when I switched to valium. The transition was gradual: basically, for a month, I gradually replaced 14 milligrams of Cinolazepam with 4 mg of Valium, while still reducing Cinolazepam. It took a while for my body to get used to it. Unlike Cinolazepam, whose effect I felt immediately, Valium was more smooth.

In December 2023 I started to feel better. Although I still had dozens of symptoms, their intensity had decreased. It was the first time in more than a year that I managed to spend 2 days at the sea with some friends. I was carrying with me the jewellery scale, a bag of pills, every cell of my body was in pain, but I managed to eat at a restaurant and sleep one night in a hotel. I was gradually coming back to life.

In the following months I started to feel better and better, but I was afraid to hope for more. Every day I lived with the sword of Damocles over my head. The symptoms decreased in intensity, then I started having bigger and bigger windows and this encouraged me to reduce the remaining Valium. In the last months I went very slowly because I didn't want to destroy the progress I had made with so much effort and tears.

For the last part of the tapering, my remaining symptoms were at 3-4 intensity. I was getting better and better. On May 7th, 3 days ago, I took my last dose of Valium. I reduced 45 mg of Valium in 17 months. I jumped at 0.3 mg of Valium by cutting every 5-6 days. The rest is history.

 

 

I am finally sitting here...

I'm writing my story to share it with you while drinking a coffee with a lot of milk (for a year I couldn't touch coffee or alcohol, because they amplified my symptoms.) Outside it's sunny, it's warm, it's quiet. "I am sitting here", said Stacy Piccolo in a video that I watched dozens of times.

https://www.youtube.com/watch?v=3vjKODvBCmg&t=3s

Now it's my turn to sit here. And trust me, you will sit here too. I guess i was one of the worst cases of short time users, yet miracles can happen (if you believe in them and you work to make them happen).

In the last months, I travelled around the country, I drove, I saw my friends again, I resumed my projects at full capacity. In 2 weeks I will fly to Charleroi (Belgium), the last airport I saw before this experience. I am closing a circle. I am more grateful and less resentful. I think I forgave everyone who brought me to this situation (except my ex; I still need to work on this). I am stronger and wiser. I've learned to love myself and to create boundaries. I am enjoying my life again, but this time at the fullest, as much as i can. I still have some remaining symptoms, coming and going: a bit jittery, a bit of muscle pain, a bit of agitation, now and then, especially when something triggers me emotionally or when i don’t get enough sleep. But now I know: this too shall pass!

 

 

My symptoms

As I promised, I will list my symptoms. I didn't keep an exact diary, so I can't say exactly which ones were constant and which ones were coming and going, but here is the full spectrum:

1. Tongue spams (non-stop, for one week)
2. Convulsions (after CT and after cutting more than 30% at once)
3. Insomnia (one full month, then coming and going)
4. HUGE muscle cramps (one of my main ones, non stop for almost one year)
5. Nerve pain going through my hands, legs and lower back
6. Muscle tension (almost non stop)
7. Akathisia
8. Mind racing
9. Intrusive thoughts and ideation
10. Weak legs, not able to walk
11. Weak left arm, almost numb for 2 months
12. Brain fog
13. Fatigue
14. Jittery / Tremor
15. Headaches
16. Nausea
17. Light headed
18. Feeling like fainting
19. Mood changing really fast
20. Adrenaline jolts (before falling asleep)
21. Morning terror
22. Feeling like my brain is jumping inside my skull
23. Feeling like i am going crazy
24. DP / DR
25. Food sensitivity
26. Psychosis
27. Auditory hallucinations
28. Anxiety
29. Depression
30. Paranoia
31. Hypersensitivity (to light, sounds, smells)
32. Pressure in my eyes and sinuses
33. Blurred vision and floaters
34. Tinnitus
35. Feeling like chocking / dying in my sleep
36. Chest pain and tightness
37. Shortness of breath
38. Heavy period with cramps, followed by no period for 3 months
39. Skin rashes
40. Burning hands
41. Fever like symptoms
42. Irritations / acne
43. Hair loss
44. Fluctuating blood pressure
45. Heart palps / feeling like my heart would stop for seconds
46. Agoraphobia
47. Anhedonia

....and probably more.

 

 

What helped me go through

To be honest, nothing in particular. Time is the key. But here are some things that played an important role in my journey:

• Talking almost daily to MBenzo
• Reading success stories on BB
• Hot showers and baths (when i was able to take them)
• Heating pillow
• Long drives with my dad. I was the passenger
• Talking about this, venting out
• Gabapentin (but pay attention, it’s working for some people, while for others has no effect)
• Propanolol (helped with palpitations and blood pressure)
• A supplement with valerian root and 5 mgs of Melatonine, for sleep
• Aspirin and magnesium for muscle cramps
• Metamizole or dipyrone for pain – was doing wonders, but pay attention to the drug interaction
• I guess the AD also helped in a certain way
• Believing and talking to The Universe, God, Buddha whatever.

 

What’s next in my life

At some point, after healing and processing this trauma, i want to share my experience with other people going through this. I will probably speak loud and clear about benzo crisis on my own vlog. I cannot coach people and i don’t want to do this because i am not an expert, but i want to raise awareness in a country where a lot of people and doctors still have no idea about the danger of psych drugs (and, unfortunately, i was one of them). I guess this will be my legacy and my way of being grateful for getting my life back.

...And of course, booking flights, seeing the world, paragliding, maybe some scubadiving. And, eventually, forgiving my ex for not being next to me in my worst moments.

I probably won't be on BB anymore, because it brings back memories that I don't want to relive, but I totally agree that you can use the information that I have provided on this forum for further studies or to help others.

You will always be in my thoughts and soul and i will be forever grateful for your support and guiding. God bless you all!

Over and out!

 

Edited May 10 by [Bl...]

[[Li...]]

Thank you so much for sharing your long, arduous but ultimately successful journey to benzo freedom with us @[Bl...].  Your drawing of you and your Benzo Buddie fighting the monster of benzodiazepine withdrawal together is amazing.  Congratulations and well done!

[[st...]]

That’s such great news, congratulations on slaying that nasty long clawed benzo dragon! Time is always on our side in this battle, even if we didn’t see it at the time. For those that wouldn’t stick around, I say they’ve failed the friendship test so it’s their loss. 

You’ve cleared your path nicely from these drugs! We can finally live life unencumbered and with powerful knowledge gained about how our bodies and this world work. We are tougher, wiser and more perceptive. I pitty the fool who messes with us again. Let the music play!

[[NO...]]

Thanks for sharing! This was great to read and so happy to hear you're almost fully healed. Love the support you've found online and in this forum as well.

I had a couple questions, at which point did you notice your hair loss stopped and how bad did it get? Also which months did you notice the biggest differences. I'm 9 months off now and noticed big positive changes at the 5, 7 and 8 month mark. Curious to hear what your experiences were like, thank you!

[[Mb...]]

As sad as it made me to see something like this happen to such a kind soul, I'm glad I got to be by your side to help you and to watch you slowly but surely earn back a life I know you will cherish and make the most of. You are a strong and amazing person. You made it and are well on your way to putting this so far behind you, nothing but a distant memory of what in hindsight was a short unpleasant speed bump in a long happy journey we all call life. Everyone on here deserves it but I'm just glad it was your turn.

[[Ja...]]

Congratulations.  I am so happy to read our success story.  Go and live your life now.  Be happy and continue to fight the benzo fight warning all who come after you.  Doctors have not got a clue about the damage benzo’s do.  I’m 8 months post an almost CT taper after 24 years on 15mg Dalmane for sleep.  Time is not on my side being in my seventies.  It’s great to read your detailed account.  I pray that you will meet a man who realises how wonderful and resilient you are and that you can love and respect one another all of your lives.  That’s true ❤️ love.

[[Rh...]]

Wow!  Such a wonderful success story to read!  Your amazing courage and strength are what got you through the toughest of times and are what will continue to get you through anything else you face ahead!

So glad your getting your life back and came to share it with all of us!

♥️♥️♥️

[[fa...]]

Congratulations. You said that the AD worked? Which one?

[[he...]]

Short termer here, 19,5 days 0,5 mg clonazepam. Severe wd, i had many of the symptoms of your list. 31 months out still affects me a lot, still have neuro damage, though overall it got a lot better the past 6 months but no where near healed. Its been waves and windows for a long time. 100% sure its all still benzo damage cause its freaky neuro stuff i never had before and i am living on organic unprocessed food, excersise, havent touched even ot meds, nothing. Toxic pills do deep damage.

[[he...]]

On 11/05/2024 at 16:53, [[N...] said:

Thanks for sharing! This was great to read and so happy to hear you're almost fully healed. Love the support you've found online and in this forum as well.

I had a couple questions, at which point did you notice your hair loss stopped and how bad did it get? Also which months did you notice the biggest differences. I'm 9 months off now and noticed big positive changes at the 5, 7 and 8 month mark. Curious to hear what your experiences were like, thank you!

I lost 30 to 40% of my hair so it got real thin and it grew back in waves so id have this funky layer of spiky hairs sticking out. I think i lost most in acute the first 4 months but maybe again a bit in some strong waves the first year? 31 months out now, for over a year its been thick again, it grew back. The hairdresser could even see the stress marks in my hair a year out, correlating to acute, it was crazy, such a shock to the body.

Edited 14 hours ago by [he...]

[[he...]]

I am so glad for everyone who heals (relatively) fast but man it gets discouraging when you are 24+ months out and still dealing with the damage