Updosing Support Group

[[NJ...]]

I am continuing to sit at my .5 mg of K where I will stay for the immediate future. I am doing pretty well. My life continues to be extraordinarily stressful, major work event last week where I worked 16+ hours a day for weeks, my son is still ill and on top of all his stomach issues has the flu, my mom is in a nursing home after a fall and broken hip, it is really overwhelming. People at work don't believe I am still carrying on with my life through all of this. The updose and hold is helping me. I don't know where I go from here but right now this is where I need to be.

[[Fi...]]

I'm doing MUCH better after up-dosing. My cognitive functions have returned to normal and my physical stamina has increased to near normal (thankfully since this past winter necessitated several weeks long shoveling of a lot of snow and enduring below zero fahrenheit temperatures).

 

I've been enjoying travel and entertainment adventures again, reuniting with family and friends. For example, last night I enjoyed a night out with friends at a restaurant that featured live entertainment. A few weeks ago, I enjoyed an out of state, week long vacation watching my grandkids participate in their activities of basketball tournaments, Brazilian Jiu-Jitsu practice, a birthday celebration and piano lessons from a mult-platinum record musician who has toured and performed with Taylor Swift, Lady GaGa, Elton John and Paul McCartney. I've also been able to once again provide a support system for some less fortunate friends who sometimes need a helping hand.

 

I'm not trying to brag or to influence others but, up-dosing was the right decision for me.

 

best wishes

[[Ba...]]

Wow well is good to know that updosing can work.  How long did it take to feel better?

Fi, can I ask your approx age?

 

I keep trying to stabilize and not go up but am sick and life is going by.  Would love to need nothing but after 35 years on meds that is sort of unlikely...

[[Su...]]

Hi, I updosed and it did not work for me. I made one dry cut from a point of stability. It was only 1% but it was too much. I updosed to my original dose after 8 days and after 6 weeks I have never really stabilized. I felt like I had updosed 10 times my normal dose, felt high, sick, out of it. Then at week 4 or so, started experiencing withdrawal symptoms almost as bad as original drop. What to do now? Every day is worse.Scared of doing taper like this, already nonfunctional.

[[Fi...]]

Hi, I updosed and it did not work for me. I made one dry cut from a point of stability. It was only 1% but it was too much. I updosed to my original dose after 8 days and after 6 weeks I have never really stabilized. I felt like I had updosed 10 times my normal dose, felt high, sick, out of it. Then at week 4 or so, started experiencing withdrawal symptoms almost as bad as original drop. What to do now? Every day is worse.Scared of doing taper like this, already nonfunctional.

 

If you wish at least somewhat informed advice from the group, you really should provide a signature indicating what medicines and dosages you are on & a history of your use and symptoms. best wishes

[[Fi...]]

Hi, I updosed and it did not work for me. I made one dry cut from a point of stability. It was only 1% but it was too much. I updosed to my original dose after 8 days and after 6 weeks I have never really stabilized. I felt like I had updosed 10 times my normal dose, felt high, sick, out of it. Then at week 4 or so, started experiencing withdrawal symptoms almost as bad as original drop. What to do now? Every day is worse.Scared of doing taper like this, already nonfunctional.

 

If you wish at least somewhat informed advice from the group, you really should provide a signature indicating what medicines and dosages you are on & a history of your use and symptoms. best wishes

 

Sunflower,

 

From your post of September 14, 2108 you indicated your history as this:

 

Clonzapam .38 mg, single dose at night, May 2012

Clonzapam .12 mg, single dose morning 2x per week, January 2014

Baclofen    4.1 mg every 4 hrs, 3x per day (reduced gradually from 20mg between April 2015-March 2017, had to hold due to illness of my child)

Lyrica, 75 mg, 2x per day (morning, night)

Phenergan, 12,5 mg as needed, July 2018

 

I have no personal experience with the use of those substances, however I wonder if you are experiencing the majority of your symptoms related to the Baclofen?

 

https://en.wikipedia.org/wiki/Baclofen

 

"Baclofen"

 

Withdrawal syndrome

 

Discontinuation of baclofen can be associated with a withdrawal syndrome which resembles benzodiazepine withdrawal and alcohol withdrawal. Withdrawal symptoms are more likely if baclofen is used for long periods of time (more than a couple of months) and can occur from low or high doses. The severity of baclofen withdrawal depends on the rate at which it is discontinued. Thus to minimise withdrawal symptoms, the dose should be tapered down slowly when discontinuing baclofen therapy. Abrupt withdrawal is more likely to result in severe withdrawal symptoms. Acute withdrawal symptoms can be stopped by recommencing baclofen.[8]

 

Withdrawal symptoms may include auditory hallucinations, visual hallucinations, tactile hallucinations, delusions, confusion, agitation, delirium, disorientation, fluctuation of consciousness, insomnia, dizziness, nausea, inattention, memory impairments, perceptual disturbances, itching, anxiety, depersonalization, hypertonia, hyperthermia (higher than normal temperature without infection), formal thought disorder, psychosis, mania, mood disturbances, restlessness, and behavioral disturbances, tachycardia, seizures, tremors, autonomic dysfunction, hyperpyrexia (fever), extreme muscle rigidity resembling neuroleptic malignant syndrome and rebound spasticity.

[[Su...]]

Thank you. I haven’t reduced my Baclofen. It’s stable. All my symptoms started after updosing my Clonzapam.  I had made one cut to clonzapam back in September, so have a sense as to the way I feel in wd. It’s very different (for me) than Baclofen. I am concerned that I am experiencing tolerance wd, despite updosing.

 

When I reduced my baclofen a few years back, I had to updose once and had no problems. I stabilized and was able taper slowly.

[[Su...]]

Buddie,

 

I am not very savvy at this, and havent figured out how to create a signature. Thank you for copying. I tried copying to paste it, but it would t let me paste.

[[Ma...]]

Buddie,

 

I am not very savvy at this, and havent figured out how to create a signature. Thank you for copying. I tried copying to paste it, but it would t let me paste.

 

Sunflower 🌻 ......just go to the home page with your name on it,  look down and you will see the word profile, click on it.  Look down and you will see signature, then you just fill it out and click done.

Don't worry, most of us take a while to figure it all out.  You will do just fine  . We are here for you, Mary 🙏💙💎🙏💙💎

[[Ca...]]

Thank you. I haven’t reduced my Baclofen. It’s stable. All my symptoms started after updosing my Clonzapam.  I had made one cut to clonzapam back in September, so have a sense as to the way I feel in wd. It’s very different (for me) than Baclofen. I am concerned that I am experiencing tolerance wd, despite updosing.

 

When I reduced my baclofen a few years back, I had to updose once and had no problems. I stabilized and was able taper slowly.

Sorry your having trouble... It seems, from a glance, that you have the right idea in regurd to medicine discontinuation, so I hope you will be able to find your path that works for you... Tolerance can be a tricky one, it seems...

Sometimes, I think change itself can create more issues than we expect.. Depends on each situation and levels of sensitivity to neuro chemistry stress, amoung other things...

I also found additional, or other meds became problematic once a benzo was in the mix, where they were fine before...

Just thoughts, -not trying to predict your situation..

 

 

[[Ba...]]

>>I also found additional, or other meds became problematic once a benzo was in the mix, where they were fine before...<<

 

Cant... yes!!!

Or vice versa.

Mirtazapine precipitated my prob.  I know for sure mirtaz was big problem, but my CT o fit was stupid.

And whether clon still is ok for me or not I do not know.  I am trying crumbs trying to figure it out as valium doesn't seem good for me.

 

Until mirtaz:  no issues.

[[Gy...]]

Hi All

Need advice about updosing. I have spent the last couple of years tapering off amitriptyline which made my life a living nightmare, but that aside I have been clear of Ami for over a year but it did leave me with terrible sxs (tinnitus, vibrating brain to name a few) but with the help of a naturopath they are abating, However I was given a natural med that had bromelain in it which I have reacted to unfortunately I took it for about 3 to 4 weeks, it gave me what I thought was breathing issues which is probably more panic issue, it like the body just couldn't relax. The body aches that have accompanied this hasn't been exactly pleasant. Plus my husband was diagnosed with a blockage in his LAD which had to be stented, but we had to wait 6 weeks before it could be done, so I had to take over his job which is extremely physical, in fact I had to take over everything as he was not allowed to do anything.

The stress has been horrendous but I battled through, then hubby finally goes into hospital for surgery and when they return him to his room I find out that nothing is wrong with his heart, they did this invasive surgery for nothing. Amazing relief but so angry, anyway the aches and pains and breathing issue have all become to much.

My usual dose is 3.5mg at dinner time, yesterday I took 2.5mg at 1.30pm then 1mg at 5pm it doesn't seem to be working so at 7.50pm I took another 2 mg as the panic was unbearable, my dilemma now is what is the best course of action? To split my dose over the day or updose? My problem with up dosing is I don't think my dr will go for that and is very strict with my scripts. I have probably about 40 extra pills as a rescue pile 😂.

Not sure what to do before the bromelain episode I was all set to taper again.

Any advice greatly appreciated.

 

Gypsy xx

[[Fi...]]

Hi All

Need advice about updosing. I have spent the last couple of years tapering off amitriptyline which made my life a living nightmare, but that aside I have been clear of Ami for over a year but it did leave me with terrible sxs (tinnitus, vibrating brain to name a few) but with the help of a naturopath they are abating, However I was given a natural med that had bromelain in it which I have reacted to unfortunately I took it for about 3 to 4 weeks, it gave me what I thought was breathing issues which is probably more panic issue, it like the body just couldn't relax. The body aches that have accompanied this hasn't been exactly pleasant. Plus my husband was diagnosed with a blockage in his LAD which had to be stented, but we had to wait 6 weeks before it could be done, so I had to take over his job which is extremely physical, in fact I had to take over everything as he was not allowed to do anything.

The stress has been horrendous but I battled through, then hubby finally goes into hospital for surgery and when they return him to his room I find out that nothing is wrong with his heart, they did this invasive surgery for nothing. Amazing relief but so angry, anyway the aches and pains and breathing issue have all become to much.

My usual dose is 3.5mg at dinner time, yesterday I took 2.5mg at 1.30pm then 1mg at 5pm it doesn't seem to be working so at 7.50pm I took another 2 mg as the panic was unbearable, my dilemma now is what is the best course of action? To split my dose over the day or updose? My problem with up dosing is I don't think my dr will go for that and is very strict with my scripts. I have probably about 40 extra pills as a rescue pile 😂.

Not sure what to do before the bromelain episode I was all set to taper again.

Any advice greatly appreciated.

 

Gypsy xx

 

You will probably need to hold until your doctor or a another doctor will work with you to find a new dose upon which you can become more stable.

 

Edit: I would be very hesitant to return to or add an antidepressant to mix at this point.

[[Gy...]]

Hi All

Need advice about updosing. I have spent the last couple of years tapering off amitriptyline which made my life a living nightmare, but that aside I have been clear of Ami for over a year but it did leave me with terrible sxs (tinnitus, vibrating brain to name a few) but with the help of a naturopath they are abating, However I was given a natural med that had bromelain in it which I have reacted to unfortunately I took it for about 3 to 4 weeks, it gave me what I thought was breathing issues which is probably more panic issue, it like the body just couldn't relax. The body aches that have accompanied this hasn't been exactly pleasant. Plus my husband was diagnosed with a blockage in his LAD which had to be stented, but we had to wait 6 weeks before it could be done, so I had to take over his job which is extremely physical, in fact I had to take over everything as he was not allowed to do anything.

The stress has been horrendous but I battled through, then hubby finally goes into hospital for surgery and when they return him to his room I find out that nothing is wrong with his heart, they did this invasive surgery for nothing. Amazing relief but so angry, anyway the aches and pains and breathing issue have all become to much.

My usual dose is 3.5mg at dinner time, yesterday I took 2.5mg at 1.30pm then 1mg at 5pm it doesn't seem to be working so at 7.50pm I took another 2 mg as the panic was unbearable, my dilemma now is what is the best course of action? To split my dose over the day or updose? My problem with up dosing is I don't think my dr will go for that and is very strict with my scripts. I have probably about 40 extra pills as a rescue pile 😂.

Not sure what to do before the bromelain episode I was all set to taper again.

Any advice greatly appreciated.

 

Gypsy xx

 

You will probably need to hold until your doctor or a another doctor will work with you to find a new dose upon which you can become more stable.

 

Edit: I would be very hesitant to return to or add an antidepressant to mix at this point.

 

Thankyou Fi

My dr whilst is good and has been patient for a lot of years I do know that she will not allow me to updose as I went against her advice in getting off the ami first. My reason was I found out this was a med that my father had been put on and he was dead at the age of 66 with a very rare form of dementia. Everything had been going great until the bromelain episode and since my life has been a nightmare.

What about splitting the dose up as in morning and night rather than waiting till dinner to take the whole lot any thoughts Or just keep at dinner and wait till my system settles??

 

Gypsy

[[Fi...]]

It should be fine to split your prescribed dose up during the day to make you feel the most comfortable.

[[Ca...]]

Hi Gypsy,

 

Yes, splitting the dose would seem like a great solution if it helps..

 

I was realy wondering how the extra 2mg worked, and for how long..??

Perhaps a few periodic rescue doses will help you through while things settle down to bearable..??

 

Dr aside, a lot will just depend on how you respond, and at what doses... For some that are sensitive, even changes from rescue doses can be problematic, but for others (me), they were a life saver with my pill splitting cut n hold at times.. So long as you are aware it can be a bit of a luck of the draw, and use some caution, I think you will be ok...

Wish it wasnt so hard to explain logic to some Drs and actually get some productive help and understanding.. But here we are...

 

Anyways, hope you work out a good way through this...

Best wishes..

 

[[Aj...]]

Hi all,

 

I can no longer go on at the dose I am at. The physical symptoms are too severe.

 

I was on 2x5mg diazepam for 20 years for muscle contracture.

 

I have re-tapered down from 4mgs to almost 1mg since last May.

 

If I updose it will need to be to a level where my muscle symptoms resolve.

 

The last dose that was ok was at least 7.5mg a day.

 

Given I have not been at that dose since Sept 2017 is it now far too late to go back up to that?

 

I know updosng/reinstating will ease muscle stuff but I am concerned it might not resolve the loss of internal sensation, constantly compulsive hunger, atrophy of muscle and adipose tissue despite weight gain, hyperacusis, altered visual perception and also the terror of whole world and visual hallucinations that got worse after last reinstatement (although was also in WD from Baclofen which took for a month and tapered quickly off of again at that point).

 

If I go up high enough and hold long enough do people think all symptoms I got in WD will resolve?

 

I had no tolerence WD symptoms at all in the 20 years I took the same dose of diazepam.

 

I am in dystonia support group and there are ppl on clonazepam for 40 years without problems.

[[Su...]]

Mary,

 

Thank you for helping me with the signature and your support! Not sure if I got it right yet, but am working on it :-)💜

 

Hope your taper is going smoothly, and your muscles are feeling better.

 

Best,

Sunflower 🌻

[[Su...]]

Mary, Fi, Cantfly,

 

Thank you for the feedback regarding updosing and other meds. Wish I didn’t have to contend with other drugs, hard enough w benzo. But my body is not responding to any change. It just wants off all meds, I can feel it!

 

Sunflower 🌻

[[Fi...]]

Hi all,

 

I can no longer go on at the dose I am at. The physical symptoms are too severe.

 

I was on 2x5mg diazepam for 20 years for muscle contracture.

 

I have re-tapered down from 4mgs to almost 1mg since last May.

 

If I updose it will need to be to a level where my muscle symptoms resolve.

 

The last dose that was ok was at least 7.5mg a day.

 

Given I have not been at that dose since Sept 2017 is it now far too late to go back up to that?

 

I know updosng/reinstating will ease muscle stuff but I am concerned it might not resolve the loss of internal sensation, constantly compulsive hunger, atrophy of muscle and adipose tissue despite weight gain, hyperacusis, altered visual perception and also the terror of whole world and visual hallucinations that got worse after last reinstatement (although was also in WD from Baclofen which took for a month and tapered quickly off of again at that point).

 

If I go up high enough and hold long enough do people think all symptoms I got in WD will resolve?

 

I had no tolerence WD symptoms at all in the 20 years I took the same dose of diazepam.

 

I am in dystonia support group and there are ppl on clonazepam for 40 years without problems.

 

Ajusta,

 

Q: "Given I have not been at that dose since Sept 2017 is it now far too late to go back up to that?"

 

I'm fairly certain you already know there are no guarantees or easy outs with these drugs. Personally, up-dosing from .25mg X has helped me immensely.

 

Q: "I know updosng/reinstating will ease muscle stuff but I am concerned it might not resolve the loss of internal sensation, constantly compulsive hunger, atrophy of muscle and adipose tissue despite weight gain, hyperacusis, altered visual perception and also the terror of whole world and visual hallucinations that got worse after last reinstatement (although was also in WD from Baclofen which took for a month and tapered quickly off of again at that point). If I go up high enough and hold long enough do people think all symptoms I got in WD will resolve?"

 

I have not suffered from all of the symptoms you have described nor do I personally know others with your symptoms so I can't share informed experiences with you on the questions you've asked.

 

Q: "I had no tolerence WD symptoms at all in the 20 years I took the same dose of diazepam."

 

Personally I believe that with your doctor(s) consent and guidance, this is a very good indication that up-dosing may be a viable option for you to consider.

 

You know I wish you the best in whatever decision you make & hope you feel better soon.

[[Ma...]]

Mary,

 

Thank you for helping me with the signature and your support! Not sure if I got it right yet, but am working on it :-)💜

 

Hope your taper is going smoothly, and your muscles are feeling better.

 

Best,

Sunflower 🌻

 

Are you doing weighed dry cuts.  I am alittle confused there. How are you tapering?  If you feel like your cut actually made you feel more drugged and now you have held a while and feel worse, why don't you try a very slow daily liquid micro taper?  Really I am just putting out a suggestion here.  You don't dare updosing, if you are in tolerance, imo, you need to start down.  A dlmt is not as complicated as it sounds, gives you much better control over your dosage.  You can think of it a symptom based taper. I don't know anything about your other meds and you seem to be pretty sure it is the benzo.  We have people on here, who are experts this.  On the Home Page there is a thread "Titration Tapers" that would be good for you to read.  If it's something you want to try, and need help understanding it, post back if you want some names or any questions I can help with.  So a lot of reading of the threads you think may have a place in your taper.  Hope more people respond too.

 

Good luck, keep me posted, Mary 🐝🦋🦋🦋🦋☘️☘️☘️☘️🐝🐝

[[NJ...]]

Hi all,

 

I can no longer go on at the dose I am at. The physical symptoms are too severe.

 

I was on 2x5mg diazepam for 20 years for muscle contracture.

 

I have re-tapered down from 4mgs to almost 1mg since last May.

 

If I updose it will need to be to a level where my muscle symptoms resolve.

 

The last dose that was ok was at least 7.5mg a day.

 

Given I have not been at that dose since Sept 2017 is it now far too late to go back up to that?

 

I know updosng/reinstating will ease muscle stuff but I am concerned it might not resolve the loss of internal sensation, constantly compulsive hunger, atrophy of muscle and adipose tissue despite weight gain, hyperacusis, altered visual perception and also the terror of whole world and visual hallucinations that got worse after last reinstatement (although was also in WD from Baclofen which took for a month and tapered quickly off of again at that point).

 

If I go up high enough and hold long enough do people think all symptoms I got in WD will resolve?

 

I had no tolerence WD symptoms at all in the 20 years I took the same dose of diazepam.

 

I am in dystonia support group and there are ppl on clonazepam for 40 years without problems.

 

I tapered from 1 mg of K to .5 mg of K in 2016. I tried several times to get lower and couldn't do it. I went back to .5 mg of K in September and am sitting here and doing mostly okay. I still have issues with my GI system but truly I am having the worst year of my life so I am sure that is a huge factor with the GI stuff. I think it is likely that many of your issues will resolve if you updose enough. I also had no tolerance WD issues--I thought I did but I really think I was just crashing after my dad died.

 

I have decided I cannot keep killing myself trying to get off. I would like to get off down the road but it cannot be right now. It sounds like you have been struggling for a while so hope you can find a way through.

[[Su...]]

Mary,

 

Thank you. I have dropped my dose twice via dry cutting. I handled the first drop ok. And held for a long time. The second drop, I dry cut again. I struggled with it and updosed to where I was bf the second cut. I am better, but not where I was bf the cut. There are days where I am ok, and days I feel like I am in wd. I am not sure if it’s tolerance.

 

When I resume tapering, I will likely try liquid microtaper, thanks, since I could not tolerate dry cut.  I am holding now as I have a chronically ill son. I have a lot of muscle problems, and am mostly Homebound from pain and spasms.

 

🌻

[[Ma...]]

Mary,

 

Thank you. I have dropped my dose twice via dry cutting. I handled the first drop ok. And held for a long time. The second drop, I dry cut again. I struggled with it and updosed to where I was bf the second cut. I am better, but not where I was bf the cut. There are days where I am ok, and days I feel like I am in wd. I am not sure if it’s tolerance.

 

When I resume tapering, I will likely try liquid microtaper, thanks, since I could not tolerate dry cut.  I am holding now as I have a chronically ill son. I have a lot of muscle problems, and am mostly Homebound from pain and spasms.

 

🌻

 

Oh Sunflower, I am so sorry, life seems so unfair sometimes.  I have muscle problems too, they have been my majority symptom through my taper.  They really suck.  I am also sorry about your son.  You are stronger than you know.  We will always be here for you.  Love, Mary 🌹🌻🌼🌷🐝🦋

[[Ma...]]

Hi all,

 

I can no longer go on at the dose I am at. The physical symptoms are too severe.

 

I was on 2x5mg diazepam for 20 years for muscle contracture.

 

I have re-tapered down from 4mgs to almost 1mg since last May.

 

If I updose it will need to be to a level where my muscle symptoms resolve.

 

The last dose that was ok was at least 7.5mg a day.

 

Given I have not been at that dose since Sept 2017 is it now far too late to go back up to that?

 

I know updosng/reinstating will ease muscle stuff but I am concerned it might not resolve the loss of internal sensation, constantly compulsive hunger, atrophy of muscle and adipose tissue despite weight gain, hyperacusis, altered visual perception and also the terror of whole world and visual hallucinations that got worse after last reinstatement (although was also in WD from Baclofen which took for a month and tapered quickly off of again at that point).

 

If I go up high enough and hold long enough do people think all symptoms I got in WD will resolve?

 

I had no tolerence WD symptoms at all in the 20 years I took the same dose of diazepam.

 

I am in dystonia support group and there are ppl on clonazepam for 40 years without problems.

 

I tapered from 1 mg of K to .5 mg of K in 2016. I tried several times to get lower and couldn't do it. I went back to .5 mg of K in September and am sitting here and doing mostly okay. I still have issues with my GI system but truly I am having the worst year of my life so I am sure that is a huge factor with the GI stuff. I think it is likely that many of your issues will resolve if you updose enough. I also had no tolerance WD issues--I thought I did but I really think I was just crashing after my dad died.

 

I have decided I cannot keep killing myself trying to get off. I would like to get off down the road but it cannot be right now. It sounds like you have been struggling for a while so hope you can find a way through.

 

NJ, how is your son, is there any new information?  Love, Mary 🌷🌼🐝🌻