Hello...my story so far...and thank you

[[Fi...]]

 

Hi all,

First time posting here.

This recovery gig is no laughing matter - what a torturous experience one would never wish upon their worst enemy. 

I am currently 5 months off valium, after a rapid (doctor guided) taper. I was taking it as prescribed, 10mg daily for 2.5 years. 

Strange symptoms started before I started tapering or considering coming off, I now know that as tolerance withdrawal. Numbness in extremities, joint/bone pain, emotions were all over the place, immune system was really low and kept getting sick, plus more. Went to doctors who said the standard "it's anxiety" and I was also working in child care at the time, so that's why I kept getting so sick (there's definitely some merit to that, but it had reached beyond just catching every virus the children got!).

 

Decided to come off Diazapam simply because I wanted to be off everything, as I had also recently got sober from alcohol a year prior to all this (YAYY!!), I hadn't put together at this point that my strange symptoms were to do with the Benzodiazepines.

 

When the tapering started I had no idea about the Ashton Manual or that benzos could cause this type of damage. My doctor gave me a tapering schedule, I trusted that, and didn't think anything of it. Now I'm on my way to happy freedom...how wrong I was.

 

This is when things started to get real and very bad, very quickly. My heart rate was through the roof which resulted in an ER visit, intense pain in my pelvis and lower back - including joint paint all over which seemed to radiate through my body like a set of Christmas tree lights flashing on the random setting, agoraphobia, paranoia, extreme restlessness, feeling like I just wanted to rip my skin off, body felt like it weighed a ton, muscle weakness and cramps (I could no longer participate in yoga or running with my friends), going to the shops or any extracurricular activities was an almighty effort, I cried ALL THE TIME, air hunger, a crushing pressure on my chest, hair loss, strange skin happenings, intense DP/DR, memory and cognitive delays, the list goes on. As the story commonly goes of course, I went to doctors, naturopaths, physios etc. and all tests came back with nothing. I always walked out with the impression that they thought I was bonkers...

 

Oh and the intrusive thoughts were near unbearable. I was really, really scared. I didn't want to say anything to anyone through this because I thought they would think I was going crazy and lock me up in a psych ward and throw some more medications at me. 

 

It was/is a really lonely, isolating, and scary experience. 

 

Through this so far I lost my relationship, I had to withdraw from study, and I could no longer work in child care. After all this, I was still completely unaware that Benzos could be having this impact. I simply thought I was failing at life and was just really, really confused about what was going on.

 

It wasn't until a few weeks ago when I had to move house, then came down with Covid quite bad so was in bed for a week that I somehow came across BIND. My head is such a blur 24/7 that I can't even remember how I found it. But my goodness I am so glad I did. Everything makes sense. Reading some of these stories are terrifying, but I finally feel heard and understood. I'm trying not to get too consumed by it all, but some days I just feel so alone in this that it gives me some sense of comfort knowing others are going through this too.

 

I went to my doctor to get a sick certificate for work. We talked about my lack of sleep, he prescribed an antidepressant to help with sleep (really!?), told me to start swimming, stress less, and everything will be fine. I do not feel fine. Far from it. 

 

I'm trying to trust the process, have a positive/healing mindset, eat wholefoods, listen to my body and rest, avoid stress, and light exercise. I have found Dr. Jennifer Leigh's content really helpful as well. 

 

Anyway, thank you for reading! Wishing & praying for everyone's healing and recovery. Thank you for sharing your journeys and experience. We are truly warriors. 

 

 

 

 

 

 

 

 

 

 

[[Pa...]]

Hello @[Fi...], welcome to BenzoBuddies,

I'm so glad you finally figured out what was happening, this process is so painful and scary but it helps to at least know what we're dealing with.

5 months off Valium is still pretty early in recovery so you can probably expect to feel like this for awhile but symptoms should gradually become less intense.  The trouble is, your brain probably won't be able to recognize you're improving because of the negativity this medication forces on us.  I think keeping a journal of your symptoms and their severity would help you be able to see you're improving.  I wish I would have kept one when I was.

We're glad you're here and hope we can help reassure you you're going to make it through this.

[[Fi...]]

17 minutes ago, [[P...] said:

Hello @[Fi...], welcome to BenzoBuddies,

I'm so glad you finally figured out what was happening, this process is so painful and scary but it helps to at least know what we're dealing with.

5 months off Valium is still pretty early in recovery so you can probably expect to feel like this for awhile but symptoms should gradually become less intense.  The trouble is, your brain probably won't be able to recognize you're improving because of the negativity this medication forces on us.  I think keeping a journal of your symptoms and their severity would help you be able to see you're improving.  I wish I would have kept one when I was.

We're glad you're here and hope we can help reassure you you're going to make it through this.

Thank you! I will definitely keep up the journalling as you suggested, I can see how that would be beneficial to track progress and reinstate hope when I'm having a bad day. Thank you for your kind and encouraging words. It all makes a difference! 

[[Th...]]

I’m about 5 1/2 months off clonazepam, I too suffer daily unfortunately. I wish I could say I’m getting better but over the last month I feel like things have been getting worse. My symptoms are severe fatigue, muscle cramps when doing anything active, tension chronic pain 24/7 muscle twitch in calves, tremor, brain fog, anxiety and depression. We are definitely lucky to have come across this forum because I feel like nobody in the health care/"real" world understand. I’m trying to maintain hope while fighting the thoughts that it is something worse like ms or fibromyalgia. 

Edited February 10 by [Th...]
Forgot something

[[Bu...]]

Hey everyone,

I'm also 5 1/2 months off clonazepam after a 6 month taper and 20 years of use.  Things are up and down, with the last three weeks being pretty rough, but I do think there is progress.  I just wish it was faster!  @[Th...],  I didn't know we were so similar in our time line.   

 

2 hours ago, [[F...] said:

Strange symptoms started before I started tapering or considering coming off, I now know that as tolerance withdrawal. Numbness in extremities, joint/bone pain, emotions were all over the place, immune system was really low and kept getting sick, plus more. Went to doctors who said the standard "it's anxiety" and I was also working in child care at the time, so that's why I kept getting so sick (there's definitely some merit to that, but it had reached beyond just catching every virus the children got!).

@[Fi...],

I was sick for years with tolerance withdrawal and didn't know either, until I found this website.  And I was a preschool teacher, too, so it was somewhat confusing with all the getting sick. 

I'm so glad you found us, this really is a great, caring community.

Blessings!

 

[[Th...]]

1 hour ago, [[B...] said:

Hey everyone,

I'm also 5 1/2 months off clonazepam after a 6 month taper and 20 years of use.  Things are up and down, with the last three weeks being pretty rough, but I do think there is progress.  I just wish it was faster!  @[Th...],  I didn't know we were so similar in our time line.   

@[Fi...],

I was sick for years with tolerance withdrawal and didn't know either, until I found this website.  And I was a preschool teacher, too, so it was somewhat confusing with all the getting sick. 

I'm so glad you found us, this really is a great, caring community.

Blessings!

@[Bu...]thats what’s been frustrating for me I feel like there hasn’t been any good months and over the last month I feel like new symptoms are popping up. It’s nice the you did a proper taper. I didn’t really taper. I was on clonazepam for 3 years on and off. 

[[Bu...]]

@[Th...],

I'm sorry about the cold-turkey, I can't imagine how hard that must be.  If it makes you feel any better, I had major new symptoms pop up at one month off and again at five months.  I'm trying to look at it as any change is progress, even a new symptom, because I think it means my brain is working things out.  But I know how frustrating and disheartening it can be.   Hang in there. 

[[Fi...]]

3 hours ago, [[T...] said:

I’m about 5 1/2 months off clonazepam, I too suffer daily unfortunately. I wish I could say I’m getting better but over the last month I feel like things have been getting worse. My symptoms are severe fatigue, muscle cramps when doing anything active, tension chronic pain 24/7 muscle twitch in calves, tremor, brain fog, anxiety and depression. We are definitely lucky to have come across this forum because I feel like nobody in the health care/"real" world understand. I’m trying to maintain hope while fighting the thoughts that it is something worse like ms or fibromyalgia. 

Yes, my mind has definitely been there as well in regards to thinking it is something else. After reading about others experiences going down these types of rabbit holes with no avail, I feel pretty certain every thing is benzo related. In a weird way I almost want it to be something else, just so it is recognised! Right now it's a very lonely boat trying to navigate this in the medical world. No one seems to want to hear about it or really believes that what is going on is actually true. I have been very lucky in having a therapist that is supportive and somewhat benzo-wise. If she's unsure, she reaches out to other professionals and does what she can in terms of helping me find acceptance in this. Because what else can be done other than accept and trust that time heals.

[[Fi...]]

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

Hey everyone,

I'm also 5 1/2 months off clonazepam after a 6 month taper and 20 years of use.  Things are up and down, with the last three weeks being pretty rough, but I do think there is progress.  I just wish it was faster!  @[Th...],  I didn't know we were so similar in our time line.   

@[Fi...],

I was sick for years with tolerance withdrawal and didn't know either, until I found this website.  And I was a preschool teacher, too, so it was somewhat confusing with all the getting sick. 

I'm so glad you found us, this really is a great, caring community.

Blessings!

Thank you! Glad your here too and have found this to be a caring and supportive community. Wonderful you have 5.5 months off, well done. The up and downs are frustrating, I can certainly relate. Not knowing what one day or one hour is going to feel like causes anxiety in itself! Trusting the process. 

[[Fi...]]

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

I’m about 5 1/2 months off clonazepam, I too suffer daily unfortunately. I wish I could say I’m getting better but over the last month I feel like things have been getting worse. My symptoms are severe fatigue, muscle cramps when doing anything active, tension chronic pain 24/7 muscle twitch in calves, tremor, brain fog, anxiety and depression. We are definitely lucky to have come across this forum because I feel like nobody in the health care/"real" world understand. I’m trying to maintain hope while fighting the thoughts that it is something worse like ms or fibromyalgia. 

Also, well done on 5.5 months! Sorry to hear you're experiencing these symptoms as well. It's not pleasant. Glad you're hear and we'll keep pushing through the discomfort until we get to the other side!