Time to ask for help….

[[Gi...]]

Hi,

I’ve used this site for the past year, but never participated, just lurked to try and educate myself, reassure myself on symptoms. I’ve hit a wall and know it’s time to ask for help before I end up losing myself further. I’m a 46 year old mum of one with no prior history of mental health issues. 

Brief history:

Diazepam  use sporadically starting 2020 for insomnia. 2/3 times per week 10mg at bed. Triggered by onset of neurological Lyme (diagnosed and treated) 

I struggled with symptoms for through until 2022 - mainly migraine, head pressure, fatigue derelasation. Attributed all this to post Lyme. Continued to work a high pressure job albeit struggled. By June 2022 the diazepam use increased, taking it daily for the first time ever, as high as 40mg per day. Never sticking to a tight enough schedule. Always believing it was helping my Lyme related residual symptoms. 
 

I began experiencing inner restlessness whilst still on the medication, this horrible new symptom set never seen before, did my research, read about tolerance/withdrawal/the dreaded akathesia word and thought maybe a lot of what I’d been dealing with was some sort of side effect of diazepam. 
 

Since the daily usage started along with the insidious inner restlessness I had to step back from my career in Aug 22, approached my GP March 23 who sent me to addiction services (I’m based in Scotland) as they were the experts in tapering. 
 

I began tapering from 35mg diazepam on Aug 23 (never stable but hopeful this was my path to wellness). I was reducing 2mg every fortnight and holding my own (with horrible symptoms but somewhat functional) and got down to 14mg by the end of January 24. Then the wheels fell off and since then I’m housebound, consumed with inner restlessness, burning skin, inner vibrations. But I can’t ‘face off’ into the symptoms any longer. I’m terrified. I tried holding on the 14mg for 1 month, then I reluctantly updosed to 16mg in mid April to no avail. Since then my symptoms continue to worsen. I split my dose 8mg am and 8mg pm. I’m terrified to taper with this level of function, I’m terrified to hold longer if the diazepam is the problem, the addiction service team aren’t rushing me but I don’t seem to be fixing at all. I barely leave the house and am consumed with terror for the future. I don’t know what I did wrong with my taper. I’m still stuck on 16mg and I barely feel any effect of each dose so I’m trapped in these symptoms 24/7 and truly feeling hopeless. I was so motivated with my initial taper last year, functioning pretty well and able to see hope. Now I’m sitting on the same dose as I was last Dec, feeling worse then ever, and I only see a Nurse once a month who just writes a prescription. If I tell them about my symptoms I’m frightened they will put me on other psychiatric medications. I just feel like I want to climb out my skin. I’ve seen many other buddies cope with this symptom, I used distraction last year but now I just don’t have the energy and am down to under 7 stone. I need to get my confidence back to taper, but keep hearing you should be stable to taper, and I’m not in the least, it’s like a horror show. So how do I formulate a forward plan from this point? I’ve tried the hold, updose to stabilise, nothing is helping. I won’t lie SI are frequent, I want so much to be here and fight but I’m terrified of making things worse. I can’t focus with the level of skin burning, vibration, and agitation. I desperately need some hope and advice, as I’m terrified of saying what I’m really feeling to any doctor as they just don’t understand and want to whip out an antipsychotic or AD. I’m terrified of having life long akathesia as I’ve read so much about the horror or it. I don’t even feel relief from my doses anymore and my family are being dragged down with me. 

Sorry for the essay, I just don’t know how to proceed from this point. I’ve been holding at 16mg for 3 months and am only getting worse. Can any buddies relate, offer advice? I feel it’s time I engage and get help from the community as things just aren’t improving. Is it the diazepam causing this, or is it that’s all that’s covering up these symptoms? 
 

Thanks to anybody who’s read this far, I truly appreciate it. I don’t know how much longer I can hang on in this state whilst feeling like I’m doing nothing  x 

[[Pa...]]

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

Your story breaks my heart, I can hear the hopelessness in your words but the fact you’re reaching out for help tells me you have hope and that’s a good thing.

I believe and you probably do too that your taper should have been much slower, while we believe we’re doing the right thing by getting off the drug sooner, we’re actually sacrificing our future in the process.  Our brains simply can’t keep up with the changes we’re inflicting on it, it needs time to repair as we reduce. 

I’ve seen members mention that updosing isn’t always successful, but I wonder if going up even more is something you’ve considered?  I know you hate to lose the ground you’ve covered but if you’re not functioning, then this might be your best option.  You can continue to hold which many members employ successfully or begin reducing again, I know none of these options are good.

I hope other members will stop by, I don’t have experience with tapering or Valium and you need options.

@[Pa...]

[[in...]]

Hello @[Gi...]! Unfortunately I don't have any great advice for you! I just want to let you know that I think it's great of you to come here asking for help. It's never too late! I wish you the best of luck 💯🙏

[[Le...]]

Many stories here of things getting very difficult as doses get lower. Sort of the idea behind the reduction curve in the tapering plans I think. someone here can likely guide you in slowly continuing with % reductions after you stabilize. I have read few stories where updosing helps much. 

Edited July 25 by [Le...]

[[Le...]]

The toll on your body from how to live to survive in that state is a real problem. Try to do what you can to get activity and proper nutrition. it is hard sometimes to do much more that just endure but it will help. 

[[Gi...]]

Thank you everyone for replying and stopping by so far. I truly appreciate it. I feel less alone. 
I don’t recognise myself, I’m wasting away to nothing and can’t continue. The addiction team aren’t very helpful, they just write prescriptions, view it as addiction not dependence….don’t understand tolerance etc. I never see an actual doctor. I suspect I did reduce too quickly to begin with, and reluctantly updosed from 14-16 seeking stability, but they won’t updose further as they view is as drug seeking. Even though I never abuse my prescription. They believe the inner restlessness is just anxiety or some other mental health condition. But I never had any of these conditions in the past, have never been on any other psychiatric medications. 
Having been on 16mg for 3 months, declining in function and not stabilising during the hold, with no way to updose (not sure it’s the answer anyway) I’m at a loss. 
The fact that when I take my medication and I get zero relief (literally I have to check if I’ve actually taken it) makes me think I must just have hit complete tolerance. Does that mean the only thing to do is jump from 16mg? I was so motivated for my taper and understand the necessity of it. I was walking lots to release the inner tension, eating well etc. Saw it all as part of the process. Then since January my world started caving in and I feel I’ve tried each sensible option. Hold, small updose, hood again. Nothing is helping and I’m just worsening daily. 

I don’t know how many more days of this I can survive.

symptoms since Jan of this year (all of which were present before/during taper which led me to believe the meds were the culprit) but they were cyclical l, I’d get breaks, better days, hope. Now I’m confined to my house with no appetite and 24/7 level 10/10 Inner restlessness, head pressure, no appetite, all over burning skin, internal vibrations that make me shake, lack of coordination, inability to focus on any task, hopelessness, despair, agoraphobia, I’m exhausted being in my own body and just want to escape. I see no hope and nobody understands. I’ve tried so hard coming down from 35-14 last year, but I honestly feel like I should just jump as this feels like acute anyway. I know it’s not the right thing to do, but the taper just hasn’t worked and since Jan I’ve been dead inside and and can’t remember what day/month it is let alone be a mum and a wife. Had this ever happened to anyone on their tapers? x 

Edited July 25 by [Gi...]

[[Le...]]

Maybe you can see some humor in the fact that it is a mental health condition now for the first time. That comment is likely the first time they have been correct. Your actual mental health has been disrupted by a drug given to you and it will recover. 

Most everyone here has gone through this. Its a long hard road no matter how long it lasts. It does end though. 

[[Gi...]]

Do you think trying an Anti depressant or SSRI is the answer on that basis? That if my mental health is now the issue, taking another medication would allow me to continue with my taper successfully? I’d do anything to get some tiny part of myself back, I’m terrified of other medications based on things I’ve read about polydrugging with psych meds. So have been extremely resistant to this and just hoping to ‘stabilise’. I just don’t know what the right/wrong thing to do in this scenario is. I’ve just always thought more meds aren’t the answer. But maybe it’s got past that. Or, rapid taper, jump and take the pain knowing at least I’m off the drug. The akathesia is so bad I’m scared to do that though. Such a horrible scenario, I feel trapped  x 

[[Le...]]

I would really really recommend not challenging your body anymore thatn it already has been. I have read a few drug pushers on this site. I hope your faith has been challenged enough at this point to not make that mistake again. There are few recoveries that will be as hard as this one but making it a little more tolerable but a little longer doesnt seem like a good trade. 

 

10% more tolerable right now but a bit longer when even if the relief was 90% it still wouldnt be enough seems like a bad trade. then you have to get off the other drug and heal from it. 

 

Edited July 25 by [Le...]

[[Le...]]

if you can force yourself to walk long distances despite how you feel it will improve things more than any drug will

[[Le...]]

i really wouldnt recommend rapid taper. i was CTed and i wont horrify you with my story. You are even now doing much better than me. 

stabilize as much as you need and get a plan formed here to start a 5-10% per month or six week taper. there is lots help here. 

[[Le...]]

someone here who has done lots of those plans will provide you info for your doctors and a plan for you. there is experience here. 

[[Gi...]]

This has always been my thought process too. Say no to any other meds, taper and ensure you’re walking, eating well etc. I was doing this religiously from 35mg down to 14mg Aug - Jan. Then everything just fell apart and I’m unable to function. I don’t want any more meds, I truly believed that getting off the diazepam would be a road to finally getting well after 5 years, I was so motivated. Now after the last 6 months of crash, hold, updose, hold, with complete disaster consequences I’m at a loss. I can barely walk through the house. I used to be able to use all that unwanted cortisol and adrenaline to put into tasks and walking. Now I just don’t seem able to. I just can’t coordinate myself and rotate ice packs, heating blankets, and cry all the time. Walking takes more energy than I have right now.

I had a bad infection in May which meant 6 weeks antibiotics, I’m sure that took an already dire situation and made it much worse, but I had no choice but to take the antibiotics. No fluroquinolones, Doxy and Cephalosporin only, but had to be in hopsital for two weeks during that time too. Now I’m just a shell! Or as we say in Scotland ‘a wee shell’ x

[[Le...]]

i understand. i have been there. 

[[Gi...]]

Lee thank you. I hope you’ve recovered/are recovering. It’s so awful. Thank you for being here for me today x 

[[Le...]]

1 minute ago, [[G...] said:

This has always been my thought process too. Say no to any other meds, taper and ensure you’re walking, eating well etc. I was doing this religiously from 35mg down to 14mg Aug - Jan. Then everything just fell apart and I’m unable to function. I don’t want any more meds, I truly believed that getting off the diazepam would be a road to finally getting well after 5 years, I was so motivated. Now after the last 6 months of crash, hold, updose, hold, with complete disaster consequences I’m at a loss. I can barely walk through the house. I used to be able to use all that unwanted cortisol and adrenaline to put into tasks and walking. Now I just don’t seem able to. I just can’t coordinate myself and rotate ice packs, heating blankets, and cry all the time. Walking takes more energy than I have right now.

I had a bad infection in May which meant 6 weeks antibiotics, I’m sure that took an already dire situation and made it much worse, but I had no choice but to take the antibiotics. No fluroquinolones, Doxy and Cephalosporin only, but had to be in hopsital for two weeks during that time too. Now I’m just a shell! Or as we say in Scotland ‘a wee shell’ x

wee shell     well i have an inside joke to cheer you a bit. my wifes name sounds like that word wee. i insisted on adding her name to our children telling her they should have both our names. mostly i just wanted to call them wee (my last name)’s. dont think she has caught on. 

[[Le...]]

create a post asking for help creating a taper plan in the Taper planning section. you will get lots of help. 

[[Pa...]]

Hi again @[Gi...], I agree with you, I don’t believe an antidepressant is your answer.  And thank you for letting us know about your infection and subsequent antibiotic use, I’m sure both of these issues had a lot to do with your current state.  Any physical or emotional upheaval will affect our symptoms.

It does sound like you’re in severe tolerance and if that’s the case then continuing your taper is your only hope.  I agree with @[Le...], a cold turkey isn’t in your best interest, although I can see why it would appeal to you.  I quit cold turkey and once you do that, you‘re done wondering if you’re doing the right thing, its a done deal. 

I see a path forward for you but believe its going to be painful, I wish we had the answers you seek, I feel terrible we don’t have more to offer. 

 

[[Gi...]]

Don’t feel terrible Pam. I think I’m in severe tolerance too. I wanted to do ‘the model taper’ and remain somewhat functional, but it’s not gone to plan at all. 
 

I’ve read Ashton cover to cover, bought the New Maudsley deprescribing guidelines book, tried to hold to stabilise etc. 

I just feel like a wee lost cause x 

[[Pa...]]

@[Gi...], this process is so discouraging, I quit cold turkey and through dumb luck was able to recover in the typical timeframe.  You armed yourself with knowledge, reached out for help from the supposed experts and followed what seems like a sensible and careful taper and this is the result, its so unfair.  

[[Gi...]]

I think it’s such a lottery Pamster. From everything I’ve read, it’s almost luck of the draw. I’m so glad you recovered well. 
 

I just don’t have a clue how to taper from a point of severe tolerance, if that’s the situation I’m in. At 16mg Valium that leaves such a long way to go, and I assume I’ll only get worse as I go? I’m worried about my son 😢 

[[Gi...]]

Just bumping to see if anyone has advice on how to proceed if in severe tolerance withdrawal having tapered from 35-16mg Valium, holding but not stabilising and getting worse daily. The options feel pretty grim 😣

[[Si...]]

If you're in severe tolerance it might be that you get a little better as you taper.  If you do get to a place of feeling better, make sure you then hold and slow down even more.

[[...]]

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

Hi,

I’ve used this site for the past year, but never participated, just lurked to try and educate myself, reassure myself on symptoms. I’ve hit a wall and know it’s time to ask for help before I end up losing myself further. I’m a 46 year old mum of one with no prior history of mental health issues. 

Brief history:

Diazepam  use sporadically starting 2020 for insomnia. 2/3 times per week 10mg at bed. Triggered by onset of neurological Lyme (diagnosed and treated) 

I struggled with symptoms for through until 2022 - mainly migraine, head pressure, fatigue derelasation. Attributed all this to post Lyme. Continued to work a high pressure job albeit struggled. By June 2022 the diazepam use increased, taking it daily for the first time ever, as high as 40mg per day. Never sticking to a tight enough schedule. Always believing it was helping my Lyme related residual symptoms. 
 

I began experiencing inner restlessness whilst still on the medication, this horrible new symptom set never seen before, did my research, read about tolerance/withdrawal/the dreaded akathesia word and thought maybe a lot of what I’d been dealing with was some sort of side effect of diazepam. 
 

Since the daily usage started along with the insidious inner restlessness I had to step back from my career in Aug 22, approached my GP March 23 who sent me to addiction services (I’m based in Scotland) as they were the experts in tapering. 
 

I began tapering from 35mg diazepam on Aug 23 (never stable but hopeful this was my path to wellness). I was reducing 2mg every fortnight and holding my own (with horrible symptoms but somewhat functional) and got down to 14mg by the end of January 24. Then the wheels fell off and since then I’m housebound, consumed with inner restlessness, burning skin, inner vibrations. But I can’t ‘face off’ into the symptoms any longer. I’m terrified. I tried holding on the 14mg for 1 month, then I reluctantly updosed to 16mg in mid April to no avail. Since then my symptoms continue to worsen. I split my dose 8mg am and 8mg pm. I’m terrified to taper with this level of function, I’m terrified to hold longer if the diazepam is the problem, the addiction service team aren’t rushing me but I don’t seem to be fixing at all. I barely leave the house and am consumed with terror for the future. I don’t know what I did wrong with my taper. I’m still stuck on 16mg and I barely feel any effect of each dose so I’m trapped in these symptoms 24/7 and truly feeling hopeless. I was so motivated with my initial taper last year, functioning pretty well and able to see hope. Now I’m sitting on the same dose as I was last Dec, feeling worse then ever, and I only see a Nurse once a month who just writes a prescription. If I tell them about my symptoms I’m frightened they will put me on other psychiatric medications. I just feel like I want to climb out my skin. I’ve seen many other buddies cope with this symptom, I used distraction last year but now I just don’t have the energy and am down to under 7 stone. I need to get my confidence back to taper, but keep hearing you should be stable to taper, and I’m not in the least, it’s like a horror show. So how do I formulate a forward plan from this point? I’ve tried the hold, updose to stabilise, nothing is helping. I won’t lie SI are frequent, I want so much to be here and fight but I’m terrified of making things worse. I can’t focus with the level of skin burning, vibration, and agitation. I desperately need some hope and advice, as I’m terrified of saying what I’m really feeling to any doctor as they just don’t understand and want to whip out an antipsychotic or AD. I’m terrified of having life long akathesia as I’ve read so much about the horror or it. I don’t even feel relief from my doses anymore and my family are being dragged down with me. 

Sorry for the essay, I just don’t know how to proceed from this point. I’ve been holding at 16mg for 3 months and am only getting worse. Can any buddies relate, offer advice? I feel it’s time I engage and get help from the community as things just aren’t improving. Is it the diazepam causing this, or is it that’s all that’s covering up these symptoms? 
 

Thanks to anybody who’s read this far, I truly appreciate it. I don’t know how much longer I can hang on in this state whilst feeling like I’m doing nothing 

I was in your exact same situation. I was 80% through my taper and fell off a cliff.  I initially updosed without benefit then held for a long while.  I never fully stabilized holding so I was left with the option of going back to my original pre taper dose or keep going.  I chose the latter.  It was absolute hell and the months after jumping were brutal.  But it did get better.  Reading Ashton manual where some people need to be off the drug completely before they can heal motivated me to push on.

I'm 5 months out, I'm better.  I have nice windows where I feel good, almost normalish. I still have severe waves and they suck but things continue to improve.

I had a physician help me through this.  For me, having them as a safety net in case things got intolerable helped tremendously.  I also knew I could always go to the hospital or inpatient stay if I continued to be a threat to myself.  This was very comforting.  I made it through all this.  You can too.  Hang in there.

[[Bu...]]

I’m also underweight with pre-existing fatigue (long covid). I also now find it hard to walk through the house and have energy to live. I have a daughter. I also have tortuous physical and mental symptoms. 
 

I have only empathy, not advice. I’ve had no choice but to cold turkey as I am intolerant of diazepam. I’m seven weeks post stopping zopiclone. 

I’m finding that each week is different, with some worsenings( now intermittent akathisia a lack of self control and worsening insomnia ) and some  improvements (some restorative sleep and improved mental function)

 

good luck to us both