Loss of sensation

[[be...]]

Hello, my name is Allie and I am 11 weeks off off K 10 years of use I did a rapid six week taper, so basically cold turkey. Since jumping my body has been completely numb inside and out I have been losing muscle tone since first week of my taper. I had wanted to reinstate to try to stabilize and taper properly to avoid further damage. I had taken one dose of .5 on Monday and .75 on Tuesday with little to no relief, and I got scared, and I haven’t taken a dose since then but now feeling how I am seems like it did give me more relief than I thought, being back to my original state of full numbness, heavy, tight skin and weakness is setting in. I can feel the muscles burning and wasting, I’m not sure if I maybe didn’t take enough of a dose or long enough to even stabilize but I do know I am getting worse every day I could really use some advice guidance success stories. I am also on gabap which I feel is holding me mentally pretty OK, but physically, I am melting away even muscle loss in my frontal forehead jaw burns to chew food it’s weak too @[Pa...]

[[Pa...]]

I'm sorry you're suffering so much but what you're feeling is normal, I quit cold turkey too and its brutal but we can recover from it.  My feeling is we suffer more intensely at first than those who taper but then our symptoms settle down a bit and we face the same long road to recovery. Of course, your experience may be different than mine because we're all so different.

Honestly, I hate to see you reinstate because tapering in no picnic and I've seen too many members regret it but if your health, your livelihood and basically your sanity is at risk then it might be your best option.

What helps us through this process is educating ourselves about what's happening, I found the fear was one of my worst symptoms and that fear made me anxious and stressed and stress will make us feel worse.  

If you decide to reinstate, try to find the lowest dose and raise it incrementally, allow the drug time to build up, you'll most likely need a few weeks for your symptoms to settle.  You'll want to stabilize which doesn't mean feeling good, it means your symptoms aren't changing drastically and you can perform your daily tasks.  

Let us know what you decide, we'll support you whatever that is. 

[[Da...]]

Please don’t reinstate. I did it and now I’m way worse. Numbness is super normal along with many other sensory issues. I have extreme muscle loss also. I reinstated for almost a year and held and nothing changed 

[[Su...]]

15 hours ago, [[b...] said:

Since jumping my body has been completely numb inside and out I have been losing muscle tone since first week of my taper.

Allie, I am experiencing much the same.  I was on K 1mgxtwice daily since around 2008. I was tapered from beginning February to first week June and it was downhill all the way. 

Right now,, I have skin burning and numbness constantly. The extent across my body varies through the day but always gets worse by evening.  My muscle atrophy is extreme.  I also experience a tightness that clamps my arms to my sides and on my head, feels like the skin is going to burst.

I'm new to this too. My Drs won't even acknowledge I'm in withdrawal, so I can't help you fix this.  At least you should know in terms of symptoms you are not the only one. 

 

[[be...]]

@[Su...] wow I’m so sorry this is so effed up! You dr didn’t try to put you back on they really don’t think it’s wd? They are nuts! I’m a complete mess I can feel the bones coming threw the bottoms of my feel no padding left just fat and I’m numb from head to toe inside and out every my eyelids inside my ears and eye balls are numb so I know it’s in my brain too that’s why I feel slow all the time! Nice to find someone with similar systems I have found a few that seem to be healing from this and some that aren’t I really hope our short tapers play in our favor. Do you take any other meds? Feel free to message me I’m am 26 yo female live it PA!

[[be...]]

13 hours ago, [[D...] said:

Please don’t reinstate. I did it and now I’m way worse. Numbness is super normal along with many other sensory issues. I have extreme muscle loss also. I reinstated for almost a year and held and nothing changed 

Did you ever stabilize and start to gain muscle back or did the wasting stop when you reinstated I will say last sunday I couldn’t do much but after those 2 doses I didn’t feel as week and the burning muscle wasting been away but yesterday it came back with vengeance since now most of the drug is prob out of my system, what were you taking and how long?

[[Su...]]

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

You dr didn’t try to put you back on they really don’t think it’s wd?

Not only that,  but they don't even recognize the symptoms......

It's outrageous,  considering I can go on the internet and find exactly what's up

[[be...]]

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

Not only that,  but they don't even recognize the symptoms......

It's outrageous,  considering I can go on the internet and find exactly what's up

Are you in any fb groups? Sorry responding is so delayed on here? How is your Mental state? Is your numbness all over too?

[[Su...]]

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

Are you in any fb groups? Sorry responding is so delayed on here? How is your Mental state? Is your numbness all over too?

No fb groups. Mental state all over the place.  More pain = mental decline.  It has lately been on my face and scalp,  but at times is whole body. 

I grew up in Pa, btw. Lancaster County. 

7 hours ago, [[b...] said:

@[Su...] wow I’m so sorry this is so effed up! You dr didn’t try to put you back on they really don’t think it’s wd? They are nuts! I’m a complete mess I can feel the bones coming threw the bottoms of my feel no padding left just fat and I’m numb from head to toe inside and out every my eyelids inside my ears and eye balls are numb so I know it’s in my brain too that’s why I feel slow all the time! Nice to find someone with similar systems I have found a few that seem to be healing from this and some that aren’t I really hope our short tapers play in our favor. Do you take any other meds? Feel free to message me I’m am 26 yo female live it PA!

 

[[Da...]]

7 hours ago, [[b...] said:

Did you ever stabilize and start to gain muscle back or did the wasting stop when you reinstated I will say last sunday I couldn’t do much but after those 2 doses I didn’t feel as week and the burning muscle wasting been away but yesterday it came back with vengeance since now most of the drug is prob out of my system, what were you taking and how long?

No the muscle didn’t come back. Nothing changed for me. Maybe you’ll be lucky. I was on 15mg v for 15 years 

[[be...]]

9 hours ago, [[S...] said:

No fb groups. Mental state all over the place.  More pain = mental decline.  It has lately been on my face and scalp,  but at times is whole body. 

I grew up in Pa, btw. Lancaster County. 

Okay so your numbness moves around that is probably a good sign that you get relief is some areas it’s no permanent and what are the odds of that I love by the airport! Is your muscle loss all over too? Face hands feet?

[[be...]]

9 hours ago, [[D...] said:

No the muscle didn’t come back. Nothing changed for me. Maybe you’ll be lucky. I was on 15mg v for 15 years 

Are you off now? If so how long

[[Su...]]

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

Okay so your numbness moves around that is probably a good sign that you get relief is some areas it’s no permanent and what are the odds of that I love by the airport! Is your muscle loss all over too? Face hands feet?

So far the most noticeable in my forearms and calf muscles.

[[Da...]]

22 hours ago, [[b...] said:

Did you ever stabilize and start to gain muscle back or did the wasting stop when you reinstated I will say last sunday I couldn’t do much but after those 2 doses I didn’t feel as week and the burning muscle wasting been away but yesterday it came back with vengeance since now most of the drug is prob out of my system, what were you taking and how long?

No I’m off now. Was in 15 years. 20mg V

[[be...]]

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

No I’m off now. Was in 15 years. 20mg V

Good for you on being off! How long now?

[[Da...]]

9 hours ago, [[b...] said:

Good for you on being off! How long now?

Only two months 😩

[[be...]]

@[Pa...]can you help guide me in the direction of anybody that had full body numbness or full body muscle loss that has recovered I am not finding much of anything. My SI is really bad from the symptoms.  

[[Ch...]]

6 hours ago, [[W...] said:

@[Ch...] 

First Steps

1) Just continue with your current prescriber… no need to inform them of your wish to taper. This allows you to taper without interference from your prescriber… 

2) Use link Brighterday has provided to purchase jewellers scale, and empty gel capsules if you wish to encase your doses. 

3) Buy a weekly or fortnightly pill organiser. If you dose twice a day, make sure to buy one with both a morning and nightly compartment. 

4) Request a change of prescription to 0.5mg tablets from your prescriber. 
 

Just focus on these 4 steps for now. 

 

On 13/08/2023 at 10:15, [[S...] said:

Allie, I am experiencing much the same.  I was on K 1mgxtwice daily since around 2008. I was tapered from beginning February to first week June and it was downhill all the way. 

Right now,, I have skin burning and numbness constantly. The extent across my body varies through the day but always gets worse by evening.  My muscle atrophy is extreme.  I also experience a tightness that clamps my arms to my sides and on my head, feels like the skin is going to burst.

I'm new to this too. My Drs won't even acknowledge I'm in withdrawal, so I can't help you fix this.  At least you should know in terms of symptoms you are not the only one. 

I am also on 2 mg since 2008. I have not started the taper yet I am so scared. I have no support system I need to work. I am so lost. I have a friend doctor that wants to put me in a 5 day detox??

[[Pa...]]

 

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

@[Pa...]can you help guide me in the direction of anybody that had full body numbness or full body muscle loss that has recovered I am not finding much of anything. My SI is really bad from the symptoms.  

If you're experiencing suicidal ideation, please talk to your family and friends and if you're not comfortable doing that, please reach out to your local community services.  Suicide, Self-Harm & Threatening Behaviour - BenzoBuddies Community Forum

Now that that's out of the way, I need to remind you how early you are in recovery, you're only 3 months out after 10 years of use, we can't realistically expect recovery this soon, it doesn't work that way.  I know what you're going through is scary and painful but educating yourself about this process is the only way to combat the fear.  

What you're feeling isn't an illness, its not a disease or an incurable injury, what you're feeling are simply symptoms of removing the drug and your body doing its best to get you back to homeostasis.  It takes a long time for our injury to heal, have you read about BIND?  

The search function works very well, I'm sure you can find others who have experienced what you are but the best thing you can do is to distract, don't search for answers, don't try to find others who are or have suffered, avoid focusing on this if you can.  Stepping away, getting outside of our tortured minds is the best option.  

What are you doing to distract yourself, its tough to do but sometimes you can get relief and even if it only for a moment, it can give you hope. 

Have you experienced any windows, I only had one and it lasted just a few seconds. 

 

 

 

[[be...]]

@[Ch...] please look into a proper taper!

[[Ch...]]

How???  I want to know. I am begging for it. I don’t know how. 

[[be...]]

Are you on fb groups join beating benzos and put a post in there also look up Ashton manual, are you having any side effects being on or just time to come off ?

[[Ma...]]

I lost feeling and connection through my whole body it never came back beside 1 day2 weeks ago I felt little connection 

[[Si...]]

On 14/08/2023 at 00:15, [[S...] said:

Allie, I am experiencing much the same.  I was on K 1mgxtwice daily since around 2008. I was tapered from beginning February to first week June and it was downhill all the way. 

Right now,, I have skin burning and numbness constantly. The extent across my body varies through the day but always gets worse by evening.  My muscle atrophy is extreme.  I also experience a tightness that clamps my arms to my sides and on my head, feels like the skin is going to burst.

I'm new to this too. My Drs won't even acknowledge I'm in withdrawal, so I can't help you fix this.  At least you should know in terms of symptoms you are not the only one. 

Omg, same here. Even my shrink who is an Addiction specialist couldn't tell me that this was part of BIND; I found it on EasingAnxiety. Will be following your journey.