Updosing Support Group

[[Ol...]]

Barbara, I had the same symptoms and the dr said the same thing to me. I did get an endoscopy to rule hiatal hernia, and it came back clear. I also took PPI’s which helped the reflux, but now  I feel stuck on those too and will have to taper. I avoided chocolate and mint for over a year and now eat them both sparingly. You will get through this! For me, it was holding at a low dose of Valium for over a year that ultimately helped.

[[Ol...]]

Hi Healthy Me, I’m sorry to read of your troubles. If we only knew how hard these were to get if we would have never started! I would say try going back to the lowest dose you can while still functioning and taper from there. Have you read the Ashton Manual?

[[va...]]

Hi everyone,

 

Olive Kitty, do you mind sharing how did you feel six months after your reinstatement /updose? I've been holding six months since updose. Of course I'm not dying like in July, bot I'm absolutely nowhere near stable. I know people say that tolerable symptoms are ok but I've never been no sissy and I was very tough "pushing through" as everyone is paranoid and fearmongering about "tolerance withdrawal" etc and I crashed, so I'm not doing that again.

 

OK I also want to tell you I was on omeprazole for about three years and I tapered taking first one every other day, then every three days etc. But I wasn't tapering the benzo. I'd check if it can affect your taper. We want to be on the safe side. I'd probably wait till you finish the benzo taper before changing anything else. Just my opinion based on no scientific facts whatsoever.

[[Ba...]]

Well dr said i had 3 cysts... but did not mention removing them?  Do they not remove them?

Kind o thinking may get 2nd opinion, tho i did not have energy enough for the first one, which is huge problem, plus agoraphobia and can't driveIf.  limites what you can do.

 

Somone said if you have hashimoto's thyroiditis that may be why it so hard to deal with the benzo stuff... some enzyme that makes gaba receptors is sort of blocked--- or something like that--  anyhow, would like to get off my clon crumb, would like to get to all valium if possible, but wondering if makes sene to add in gabapentin or lyrica if that not possible.  I see very few people getting off this stuff, or even stabilizing sometimes without additional med.

 

If on 2 mg val, and .25 or so clonopin crumb, converted to valium amoutn, I think,  and 2/3 of 10 ambien, which supposed to be like say 6 valium...?  so seriously would I be on 8.25 valium??  That is more than i was on 3 years ago boy i am not thrilled at all.

 

thx

[[Ol...]]

Hi ValiumNM,

Well it is very hard to say.. my healing has been very non liner as all of ours has. 6 months after my long hold began was around September 2018, I was getting out a bit more than when I was in acute, I guess I would say it was tolerable but not really enjoyable, ever. I also deal with intense emetophobia, so much that it completely takes over my brain and it's all I can think about, and when I was dealing with w/d I was OCD about it, I was so scared all the time. That has lessened a lot now, I'm still scared of it but I can leave the house and go on walks and things and not worry that I am going to be sick. I guess it was about a year after I started the long hold that I started to actually feel better, and it wasn't until 1.5 years that I really started to feel better. I know that sounds discouraging because it is so long, but encouraging because I actually did start to feel better!

 

Barbara, I'm sorry to hear about your cysts, I guess if they are not dangerous they might not remove them.. where are they? A second opinion definitely couldn't hurt, if you can muster the strength to go to yet another Dr. As far as the K to V crossover, if you are taking .25 K then that would be 5mg V, so if you are already on 2mg V then you would start with 7mg Valium. If anyone wants to double check my math there that might be helpful. I'm going on the scale 1mgK=20mg V.

 

Nighty night all.

[[Ba...]]

Kitty, your first taper, how low did you get and then what did you bump up to and hold for a year??

 

thx

[[Ba...]]

Hi ValiumNM,

Well it is very hard to say.. my healing has been very non liner as all of ours has. 6 months after my long hold began was around September 2018, I was getting out a bit more than when I was in acute, I guess I would say it was tolerable but not really enjoyable, ever. I also deal with intense emetophobia, so much that it completely takes over my brain and it's all I can think about, and when I was dealing with w/d I was OCD about it, I was so scared all the time. That has lessened a lot now, I'm still scared of it but I can leave the house and go on walks and things and not worry that I am going to be sick. I guess it was about a year after I started the long hold that I started to actually feel better, and it wasn't until 1.5 years that I really started to feel better. I know that sounds discouraging because it is so long, but encouraging because I actually did start to feel better!

 

Barbara, I'm sorry to hear about your cysts, I guess if they are not dangerous they might not remove them.. where are they? A second opinion definitely couldn't hurt, if you can muster the strength to go to yet another Dr. As far as the K to V crossover, if you are taking .25 K then that would be 5mg V, so if you are already on 2mg V then you would start with 7mg Valium. If anyone wants to double check my math there that might be helpful. I'm going on the scale 1mgK=20mg V.

 

Nighty night all.

The cysts are in my throat.

No, am taking .005 g klon by weight.  .005/.171 x .5 mg tablet = .0146 mg.  I think.  Times 20 = .29 mg valium???  Plus all the other crap.

So depressing.  Who invented these drugs???

[[Ol...]]

Hi Barbara,

In your throat! I would definitely get a second opinion, it would be great to get those out of there.

To answer your question, I tapered down to 0mg and lasted about a week before I reinstated to 2mg Valium and that's where I held for a year and a half. I started tapering again this last Sept and am now down to .5mg and am stable. I am taking it very slow though I don't want to get over confident.

I thought you had said your crumb was .25mgK... if it is only .0146mg then that is better, less Valium to add if you plan on crossing over!

[[va...]]

Thanks OK. I feel more or less like you felt at six months holding. Instead of agoraphobia I get monophobia but the constant fear and ocd is the same. I'll wait.

 

Barbara, I'm not sure I'd cross over from ambien to Valium. I'd ask about that in the z drugs group. More Valium, ugh. I wouldn't but you need more informed opinion from people who know about the z drugs addictive potential versus Valium.

 

Are the throat cysts very big? Are they a consequence of a cold? I hope you can get a second opinion. It must be very hard for you being alone and with the agoraphobia, however I think you'll find the strength to deal with this. Meanwhile it's probably good to keep your throat warm?

[[NJ...]]

Hi everyone,

 

Olive Kitty, do you mind sharing how did you feel six months after your reinstatement /updose? I've been holding six months since updose. Of course I'm not dying like in July, bot I'm absolutely nowhere near stable. I know people say that tolerable symptoms are ok but I've never been no sissy and I was very tough "pushing through" as everyone is paranoid and fearmongering about "tolerance withdrawal" etc and I crashed, so I'm not doing that again.

 

OK I also want to tell you I was on omeprazole for about three years and I tapered taking first one every other day, then every three days etc. But I wasn't tapering the benzo. I'd check if it can affect your taper. We want to be on the safe side. I'd probably wait till you finish the benzo taper before changing anything else. Just my opinion based on no scientific facts whatsoever.

 

Val,

Just to add on here, I had to hold for more than a year to feel really stable. Like you, I was better after updosing and holding a bit but I saw real progress at the year mark.

[[va...]]

Thanks for the input NJStrength. Praying that your circumstances get easier in this New Year.

[[Ba...]]

Thanks OK. I feel more or less like you felt at six months holding. Instead of agoraphobia I get monophobia but the constant fear and ocd is the same. I'll wait.

 

Barbara, I'm not sure I'd cross over from ambien to Valium. I'd ask about that in the z drugs group. More Valium, ugh. I wouldn't but you need more informed opinion from people who know about the z drugs addictive potential versus Valium.

 

Are the throat cysts very big? Are they a consequence of a cold? I hope you can get a second opinion. It must be very hard for you being alone and with the agoraphobia, however I think you'll find the strength to deal with this. Meanwhile it's probably good to keep your throat warm?

 

I'm literally in bed most of the time and under warm blanket, so yes.  Going to drs, the stress sets me way back.

 

Last night tried more valium, less ambien, I don't know and don't think very clearly it is hard.  you know originally was on clonopin, no valium, with sometimes ambien or lyrica to sleep.  i was doing better at that time.  but 3 years... my body is trashed by now.

[[va...]]

Barbara I realize this must be so difficult. The worst for the brain are changes. You need to decide what meds and doses you're taking and you need to stick to that, at least to give your brain some stability. My psychiatrist says the worst for the brain is changes in doses, something us benzo sufferers have learnt the hard way. If you keep changing you're making things worse for yourself. I know that feeling so bad you want to do something, but your brain needs stability, not changes. Unless you get very good, informed advice on your meds, you make a change in your doses and then you stick to that new dose for months or a year or more. But you can't get better if you keep making changes. I really hope you find the strength to get someone to look at your throat.

[[NJ...]]

Thanks OK. I feel more or less like you felt at six months holding. Instead of agoraphobia I get monophobia but the constant fear and ocd is the same. I'll wait.

 

Barbara, I'm not sure I'd cross over from ambien to Valium. I'd ask about that in the z drugs group. More Valium, ugh. I wouldn't but you need more informed opinion from people who know about the z drugs addictive potential versus Valium.

 

Are the throat cysts very big? Are they a consequence of a cold? I hope you can get a second opinion. It must be very hard for you being alone and with the agoraphobia, however I think you'll find the strength to deal with this. Meanwhile it's probably good to keep your throat warm?

 

I'm literally in bed most of the time and under warm blanket, so yes.  Going to drs, the stress sets me way back.

 

Last night tried more valium, less ambien, I don't know and don't think very clearly it is hard.  you know originally was on clonopin, no valium, with sometimes ambien or lyrica to sleep.  i was doing better at that time.  but 3 years... my body is trashed by now.

 

 

Barbara,

 

I agree with val, try to stick to a regular dosage of something.

 

You have been sick so long, when I was in that place I did a significant updose (from about .33 mg of K to 75 mg) and held and now am mostly okay despite the continued life stress with my son's illness. I don't know what you should do but I think going up a little here or there or down a little is not working in your favor. I think you need to be honest with yourself: what do you want at this point in life? To be off of the benzo or to have more stability and more of a life? If the answer is the latter, you need to figure out what to do to get there. Up your dose, add a med, something.

[[Ba...]]

Valium,

 

I did not make a lot of changes but some, yes.  But realize it has been 3 years now.  My big mistake was figuring I'd taper off clon since it was not working (for sleep which is why I took it).  Really had uneventful taper down to something like .25 (half of a half).  I had no idea me tapering down could cause a problem. 

Was depressed (hey, Mom had died so I would be), that is when mirtaz was added and all hell broke loose.

Then a FB group really goaded me into continuing to taper off THAT while still a wreck from the mirtaz.

 

So bad group,  bad drs (said mirtaz could not do that).  What an ordeal.

 

Wish had never started tapering off, period.

 

Any people who were on 30, 40 years still standing?  Think there is one...

 

Oh, don't know what cysts are from and that dr. has yet to call back.  I really have had it with drs.

[[Ba...]]

Oh, Valium, upping valium, cutting ambien so did not work-- lasted 2 days and back wehre I was.

 

Actually what I see MOST is people adding in gabapentin (or lyrica), getting stable, taking it from there.

 

And I think a distinction needs to be made betw. people who went on benzos, felt immediately bad, and went off vs. those of us who used them for decades and worked, functioned, had a life on them.  IT is coming OFF that is the problem.

[[va...]]

Barbarave I'm on gabapentin and I can't say it does nothing but I'm nowhere near stable. If you've gone back to your usual dose of Valium and ambien I'd hold there for months, because going up and down every week only makes things worse. How are the cysts? I hope that's getting better or if not I'll pray a doctor can see you Barbara.

[[Ba...]]

Yes I am not going to try that one again.

 

My cysts are internal so I wouldn't know!

 

BUT uri seems way less and over that horrible antibiotic  which was worse than the disease.

 

If I don't talk I don't cough much so that is inconvenient but when I get to coughing my voice disappears anyhow. 

Maybe a second opinion one day.  Or need to buy some new Pepcid sort of thing take it, see if it makes any difference.  I had some on hand but expired-- so next outing.

[[Ba...]]

Valium, 

were you put on gabapentin with the idea you'd get used to it then taper off benzos?  That is how drs. seem to use it here.

 

Are you saying you did not feel much better or worse or anything on it vs. not on it?

[[va...]]

Barbara, last summer I had a crash that I have no words to describe. I would've taken rat poison if someone had told me it would ease my terror. One psychiatrist wanted to give me Lyrica, I'm very scared of that one. This one wanted to give me remeron, I said no, also scared. Then he said gabapentin. I read some horror stories on that one but fewer. I took it a and of course I'm hooked now. The terror didn't go away when taking it not did anything else. I'm better than in summer but I'm still in a milder kind of hell. I will never know if the gabapentin has helped at all or only the updose and long hold which has helped eventually but I'm nowhere near stable. Always in fear. ALWAYS. He also prescribed trazodone for sleep. In the first two months it did nothing, but now God it does help. I was too terribly symptomatic in summer to benefit from anything, but now the trazodone does help me sleep. Only 50 mgs. More than that I think is not a sleep aid. If I could go back to summer, I'd take the trazodone and refuse the gabapentin. Just my own personal experience. Please find a way to get that throat checked 😘

[[NJ...]]

Oh, Valium, upping valium, cutting ambien so did not work-- lasted 2 days and back wehre I was.

 

Actually what I see MOST is people adding in gabapentin (or lyrica), getting stable, taking it from there.

 

And I think a distinction needs to be made betw. people who went on benzos, felt immediately bad, and went off vs. those of us who used them for decades and worked, functioned, had a life on them.  IT is coming OFF that is the problem.

 

Barb,

 

I was on a benzo from age 8 to 24 then began with klonopin at age 31 and now 51. So I get the long term use. Which is why I am not tapering at the moment, after such use it is just too hard with other things in my life.

 

I also used for sleep and K no longer helps me sleep. Neither does the mirtazapine, at least not that I can depend upon.

 

Yes, coming off is the problem. I know I have mentioned this before, do you really want to come off? Or just feel you have to as you have tried for so long? For me, life is too short to have my life such a mess when I am tapering. (I will taper but it will be when my son is off to college and I am going to go very slow).

 

Your posts break my heart. I am sorry you are struggling so much.

[[va...]]

Oh, Valium, upping valium, cutting ambien so did not work-- lasted 2 days and back wehre I was.

 

Actually what I see MOST is people adding in gabapentin (or lyrica), getting stable, taking it from there.

 

And I think a distinction needs to be made betw. people who went on benzos, felt immediately bad, and went off vs. those of us who used them for decades and worked, functioned, had a life on them.  IT is coming OFF that is the problem.

 

Barb,

 

I was on a benzo from age 8 to 24 then began with klonopin at age 31 and now 51. So I get the long term use. Which is why I am not tapering at the moment, after such use it is just too hard with other things in my life.

 

I also used for sleep and K no longer helps me sleep. Neither does the mirtazapine, at least not that I can depend upon.

 

Yes, coming off is the problem. I know I have mentioned this before, do you really want to come off? Or just feel you have to as you have tried for so long? For me, life is too short to have my life such a mess when I am tapering. (I will taper but it will be when my son is off to college and I am going to go very slow).

 

Your posts break my heart. I am sorry you are struggling so much.

 

Barbara, I endorse every single word NJStrength has said.

 

NJStrength, don't you obsess about being cut off the benzo by some unexpected event? I really want to hold because I feel terrible and can't possibly taper like this and remain functional, but I have OCD constantly anticipating that something could send me to hospital and could be forced to CT or rapid taper. This is seriously interfering with my hold. I don't know why others don't have it so bad, especially when some people just stay on benzos for 60 years.

[[Ch...]]

Just got my comment removed from a benzo support group on fb because someone asked if they could ever take a benzo again and according to dr. ashton she said yes you can.  This woman one of the administrators said no you can not she also told me to throw my pills away.  She said that dr. ashton manual not all of it was accurate about alcohol and benzos you can never ever take them again.  Anyway this was from her manual .

 

 

BENZODIAZEPINE USE DURING AND AFTER WITHDRAWAL

What happens if someone who is in the course of benzodiazepine withdrawal or has successfully withdrawn

needs a surgical operation? Benzodiazepines are of value as premedication before major operations and for

sedation and amnesia during minor surgical procedures. Yet many ex-users are terrified that if they are

given a benzodiazepine for these purposes they will become dependent all over again. They can be

reassured: a single dose of a benzodiazepine given for an operation does not bring back the addiction,

although the stress of an operation may re-awaken the anxiety symptoms experienced during

benzodiazepine withdrawal. Symptoms reported under these circumstances have usually been the result of

fear. Many personally observed patients have had repeated doses of midazolam (Versed, Hypnovel), a

short-acting benzodiazepine, for dental procedures (dental phobia is common in withdrawal), and other

benzodiazepines including diazepam for major and minor surgery and have recovered without

complications.

Also, people who have gone back on benzodiazepines, having failed at the first attempt at withdrawal, can

be just as successful at tapering as first-timers.

 

 

Maybe I shouldn't say this here either but if I'm having a really bad panic attack I'm not going to suffer I'm 53 years old if my heart is pounding out of my chest for hours and I feel nauseous and light headed, my husband died 3 years ago I have no one to talk me down.  I will take a xanax.  I am currently tapering off klonopin since November 9.  Doing a liquid titration micro taper I'm no way near done with this.  Still have a long way to go but I"m doing it.

 

So I'm searching online for this information that this woman says exists. 

[[Ol...]]

In my opinion that is fine. My ex went through a taper a year before we met, and during our relationship took Xanax a few times and was totally fine. I think it is up to the individual. The fb groups are very weird about updosing, rescue doses, and long holds.

[[NJ...]]

Oh, Valium, upping valium, cutting ambien so did not work-- lasted 2 days and back wehre I was.

 

Actually what I see MOST is people adding in gabapentin (or lyrica), getting stable, taking it from there.

 

And I think a distinction needs to be made betw. people who went on benzos, felt immediately bad, and went off vs. those of us who used them for decades and worked, functioned, had a life on them.  IT is coming OFF that is the problem.

 

Barb,

 

I was on a benzo from age 8 to 24 then began with klonopin at age 31 and now 51. So I get the long term use. Which is why I am not tapering at the moment, after such use it is just too hard with other things in my life.

 

I also used for sleep and K no longer helps me sleep. Neither does the mirtazapine, at least not that I can depend upon.

 

Yes, coming off is the problem. I know I have mentioned this before, do you really want to come off? Or just feel you have to as you have tried for so long? For me, life is too short to have my life such a mess when I am tapering. (I will taper but it will be when my son is off to college and I am going to go very slow).

 

Your posts break my heart. I am sorry you are struggling so much.

 

Barbara, I endorse every single word NJStrength has said.

 

NJStrength, don't you obsess about being cut off the benzo by some unexpected event? I really want to hold because I feel terrible and can't possibly taper like this and remain functional, but I have OCD constantly anticipating that something could send me to hospital and could be forced to CT or rapid taper. This is seriously interfering with my hold. I don't know why others don't have it so bad, especially when some people just stay on benzos for 60 years.

 

Val,

 

I don't obsess about it. I tend to worry about everything but I can't worry about getting cut off. My Primary Care Physician who is young saw what a mess I was trying to taper and I know she will prescribe if I need it. In terms of a hospital setting, they should continue your meds. Have a medication list with you (of course I don't but my husband and kids both know what meds I am on). Honestly, I just can't taper now so it is a complete non-issue. Still too much on my plate to fall apart again. I suspect that if you keep holding you will eventually feel a bit better. I know it's hard. I thought I was better after my updoses last year but honestly it was not until very recently that many of my depressive symptoms went away. yes, the new job does help and my son being a smidge better helps but I am no longer waking up with racing heart, which I did for all the time I was tapering. I really never expected to feel this good again. When I do resume my taper, I plan to go so very slow that I will never notice the dose reductions. It may take me forever but I refuse to let this take over my life again if I can help it (which I realize I may not be able to).