The Long Hold Support Group

[Guest [Lo...]]

For everyone struggling during your hold, this is a list I compiled of the sxs I experienced while holding. These cycled through in the windows and waves pattern with more waves than windows for quite a while, before becoming somewhat consistent.

 

List of sxs experienced during this 6 month hold:

Electric shocks in legs, feet and hands

Severe sweating

Muscle and nerve pain in shoulders, neck, feet, legs and back

 

 

 

 

Excessive DP/DR

Extreme fatigue

Terrible depression

Vertigo

Muscle fasciculations

Frequent urination

Anhedonia

Apathy

Activity intolerance

Insomnia

Tinnitus

Blurry vision with floaters

Hands shaking

Feeling like I live in a dream world

Impaired cognitive function

 

I think when sxs ramp up during a hold, the tendency is to panic when we are better served by understanding that our current condition is temporary and will pass as our bodies adjust and repair and we again reach a more calm state.

 

Hang in there!  —V

 

Thanks for the symptom list V,  I have 5 or 6 right now, pretty severe, but holding and hoping.  Just switched to Pharm Liquid Diazapam, really hoping it helps.  Hope you have a good day!  Yes, this thread can move fast, we all know each other , pets, and family pretty well.  So sometimes we talk to much 

 

I am having a lot of these symptoms and have not yet started my taper.  Does that mean I am really in tolerance withdrawal?

 

[[Va...]]

For everyone struggling during your hold, this is a list I compiled of the sxs I experienced while holding. These cycled through in the windows and waves pattern with more waves than windows for quite a while, before becoming somewhat consistent.

 

List of sxs experienced during this 6 month hold:

Electric shocks in legs, feet and hands

Severe sweating

Muscle and nerve pain in shoulders, neck, feet, legs and back

 

 

 

 

Excessive DP/DR

Extreme fatigue

Terrible depression

Vertigo

Muscle fasciculations

Frequent urination

Anhedonia

Apathy

Activity intolerance

Insomnia

Tinnitus

Blurry vision with floaters

Hands shaking

Feeling like I live in a dream world

Impaired cognitive function

 

I think when sxs ramp up during a hold, the tendency is to panic when we are better served by understanding that our current condition is temporary and will pass as our bodies adjust and repair and we again reach a more calm state.

 

Hang in there!  —V

 

Thanks for the symptom list V,  I have 5 or 6 right now, pretty severe, but holding and hoping.  Just switched to Pharm Liquid Diazapam, really hoping it helps.  Hope you have a good day!  Yes, this thread can move fast, we all know each other , pets, and family pretty well.  So sometimes we talk to much 

 

I am having a lot of these symptoms and have not yet started my taper.  Does that mean I am really in tolerance withdrawal?

 

This is the question asked a lot. Is it tolerance or just plain withdrawal as your current dose is no longer able to cover symptoms. I honestly believe a lot of what finally brings people to come off is the side effects of the drug that become more profound with time.  I had the shaking, mushy brain, floaters, tinnitus, apathy, depression, anhedonia and weak/tired issues long before I started my taper.  When I started, I cut almost half my dose in 5 weeks and was thrown into the depths of misery by destabilizing my system so rapidly.

 

I honestly believe that even if you are experiencing some of these, you can start very slowly and listen to your body and be fine doing a taper.  --V

[[Fi...]]

Quoted from Intend

And I also printed off all the withdrawl effects of withdrawing from any benzo from Baylissa.com. So I’ve had all these side effects and withdrawals effects when I’ve tried to taper. This is no “fun” and it makes it hard to even tolerate clonazepam for me tapering or holding. I’ve known others like this. The benzo that they were prescribed just made them sick from almost the moment they took it, and then withdrawl was worse. 

 

Every drug has side effects and pretty much withdrawl effects. Usually benzos are well tolerated, but benzos as a class of drugs, are not necessarily tolerated individually. So while I tolerated alprazolam w/o problems, clonazepam has been hard on me. I’m just hoping that as I taper down, more receptors will up regulate, and I will feel better.  

 

Hi Intend,

What you shared above really resonated with me. I too felt better on alprazolam and when my doctor told me she was prescribing clonazepam, even my husband was not keen on the idea and said I should stick with the alprazolam they gave me in the emergency room.  I was too overwhelmed and sick to listen.  I even felt better on Xanax the first time I was on benzos.  I'm not saying the taper would be easier but at least there was some initial benefit.

 

Clonzapam has never worked for me and there have not been any benefits to taking it.  It makes me depressed,  and if feel so tired from it.  The only way that will change is by slowly coming off and that is what I am determined to do. 

 

 

[[Va...]]

Valley, did you by any chance find anything that helped with your back, neck, and shoulder muscles?

Many of us on here right now are really struggling with our muscles  . Mary

 

Hi Mary.  I used some stretching, heating pads and a foam roller.  It's crazy how tense muscles get as we come off of these.  I also did take a lot of epsom salt baths.  I took nsaids infrequently. If you can do some light activity that also helps as we have a tendency to become couch potatoes during the taper which also keeps muscles tense up.  I do know how hard it is to do activity at times.  It was only sheer will that pushed me out the door to take walks.  Of course being careful not to get revved up too much.  Hope that helps a little.  --V

[[Ol...]]

I have been a couch potato for 2 years!!! I just started really taking walks again and my body feels like it's 100 years old. I am just going to push through it though, I think it will get better.

[[Va...]]

I have been a couch potato for 2 years!!! I just started really taking walks again and my body feels like it's 100 years old. I am just going to push through it though, I think it will get better.

 

It definitely will!  --V

[[Ma...]]

Valley, did you by any chance find anything that helped with your back, neck, and shoulder muscles?

Many of us on here right now are really struggling with our muscles  . Mary

 

Hi Mary.  I used some stretching, heating pads and a foam roller.  It's crazy how tense muscles get as we come off of these.  I also did take a lot of epsom salt baths.  I took nsaids infrequently. If you can do some light activity that also helps as we have a tendency to become couch potatoes during the taper which also keeps muscles tense up.  I do know how hard it is to do activity at times.  It was only sheer will that pushed me out the door to take walks.  Of course being careful not to get revved up too much.  Hope that helps a little.  --V

 

Thanks OK, until this last wave I was doing Treadmill and yoga, but I have just been in so much pain, it gets worse after I exercise.  I have been taking one ibu almost everyday and I just read a thread, does not work well with healing gaba, at least that is how I understood it.  U can't really trust my reading of medical information  .  This had been my most severe symptom, I desperately need to get it calmed down some. 

[[Me...]]

V- your signature says you walked off at .5 with no symptoms.  So you are Benzo free and had no symptoms on your walk off?

~ meems

[[Me...]]

Oh this is a beast.  I’m in a wave.  Yesterday was an ok day. Today I feel like I’m in that weird altered state in my brain.  I got my blood test this morning for glucose and lipid panel.  And I have to take my mom to her dr appt this afternoon which is causing me anxiety driving this way.  Then tomorrow, and guys I’m so scared, I gotta take Maggie my 14 year old cat to her a radioactive iodine treatment for her Hyperthyroidism.  And it’s a long drive.  The longest I’ve done in taper withdrawal.  Plus it’s emotional cause she’ll have to stay there for either 3-5 days or 4-7 days.  Ok, meems breathe.  I’m on the verge of tears.  This is too much.  I know we have to  be patient and have acceptance in our tapers but it’s so hard. Now I’m crying and it’s hard to type.  I’m in so much fear and pain and I’m sorry to be so dramatic. 

~meems

[[Ma...]]

Oh this is a beast.  I’m in a wave.  Yesterday was an ok day. Today I feel like I’m in that weird altered state in my brain.  I got my blood test this morning for glucose and lipid panel.  And I have to take my mom to her dr appt this afternoon which is causing me anxiety driving this way.  Then tomorrow, and guys I’m so scared, I gotta take Maggie my 14 year old cat to her a radioactive iodine treatment for her Hyperthyroidism.  And it’s a long drive.  The longest I’ve done in taper withdrawal.  Plus it’s emotional cause she’ll have to stay there for either 3-5 days or 4-7 days.  Ok, meems breathe.  I’m on the verge of tears.  This is too much.  I know we have to  be patient and have acceptance in our tapers but it’s so hard. Now I’m crying and it’s hard to type.  I’m in so much fear and pain and I’m sorry to be so dramatic. 

~meems

 

Oh Meems, I am so sorry.  You have so much on your plate and having to leave your cat for a long treatment  . We are with you, please let us know you are home.  Breathe, full belly breaths.  You can do this, love ya Meems.  Please be careful driving. Mary 💜

[[Tr...]]

Valley, did you by any chance find anything that helped with your back, neck, and shoulder muscles?

Many of us on here right now are really struggling with our muscles  . Mary

 

Hi Mary.  I used some stretching, heating pads and a foam roller.  It's crazy how tense muscles get as we come off of these.  I also did take a lot of epsom salt baths.  I took nsaids infrequently. If you can do some light activity that also helps as we have a tendency to become couch potatoes during the taper which also keeps muscles tense up.  I do know how hard it is to do activity at times.  It was only sheer will that pushed me out the door to take walks.  Of course being careful not to get revved up too much.  Hope that helps a little.  --V

 

Thanks OK, until this last wave I was doing Treadmill and yoga, but I have just been in so much pain, it gets worse after I exercise.  I have been taking one ibu almost everyday and I just read a thread, does not work well with healing gaba, at least that is how I understood it.  U can't really trust my reading of medical information  .  This had been my most severe symptom, I desperately need to get it calmed down some. 

Hey MM I've been reading a little on the sidelines. Don't hold me to this but I'm pretty sure I read somewhere that one of the sxs of taking Valium was muscle soreness/ pain. Look up the sxs of Valium I'm almost positive that's one of them. So I'm wondering if you're just suffering a sxs of Valium itself and not taper related.

TT too many T'S TRISH ♥️

[[In...]]

Meems- Valley just posted the propaganda a few pages back... it's the reeeeeeealy long thread!

Triggering is the correct word for the fb group, I agree! Turning off the notifications made a huge difference for me, I can go there when I want to but it does not even show up in my feed.

 

Intend- I loved the Girl With the Dragon Tattoo books! Could not put them down. I never saw the movies tough I did hear that the Swedish version was the best. I will have to go back and watch them.

 

I hope everyone is having an ok night 

 

Olive,

 

The Swedish version was so good. After those 3 movies, I happened to watch a really old movie on tv with Max von Sydow (Swedish actor, very famous) in black and white. That movie had subtitles also, so I thought, “the Swedish really know how to do subtitles.”

 

Slow and readable so it was easy to watch what is  happening. Be sure to catch those 3 if you can. 

[[In...]]

Do.you guys think.this new teva could csuse a set back. I get thesr tight cramps in.my thighs and really bad tops of thigh area snd left hip. My mucles felt ok.  Now this teva is going to destroy them. This is making me crazy. I know how bad you all are suffering too. I shouldn't even complain.  You get rid of some sx and then here comes another. I feel so damaged. That is cuteb8ntend youbwere talking to little pepper..lol. I alwsys talk to my cat. She seems to understand me too.

 

DD,

 

Pepper is the first one up in the morning with me. When I need to call anyone, I just automatically talk to her to see if I can be understood. But I talk to her anyway no matter what. She understands me also just like your cat understands you.

 

I read this study that said cats bond with their owners just like dogs do, but many times they are just too aloof to show it. Pepper’s not aloof with me, but she very aloof with everyone else. She’ll talk to Dan, but will not let him pick her up period.

[[In...]]

For everyone struggling during your hold, this is a list I compiled of the sxs I experienced while holding. These cycled through in the windows and waves pattern with more waves than windows for quite a while, before becoming somewhat consistent.

 

List of sxs experienced during this 6 month hold:

Electric shocks in legs, feet and hands

Severe sweating

Muscle and nerve pain in shoulders, neck, feet, legs and back

 

 

 

 

Excessive DP/DR

Extreme fatigue

Terrible depression

Vertigo

Muscle fasciculations

Frequent urination

Anhedonia

Apathy

Activity intolerance

Insomnia

Tinnitus

Blurry vision with floaters

Hands shaking

Feeling like I live in a dream world

Impaired cognitive function

 

I think when sxs ramp up during a hold, the tendency is to panic when we are better served by understanding that our current condition is temporary and will pass as our bodies adjust and repair and we again reach a more calm state.

 

Hang in there!  —V

 

Thanks for the symptom list V,  I have 5 or 6 right now, pretty severe, but holding and hoping.  Just switched to Pharm Liquid Diazapam, really hoping it helps.  Hope you have a good day!  Yes, this thread can move fast, we all know each other , pets, and family pretty well.  So sometimes we talk to much 

 

I am having a lot of these symptoms and have not yet started my taper.  Does that mean I am really in tolerance withdrawal?

 

This is the question asked a lot. Is it tolerance or just plain withdrawal as your current dose is no longer able to cover symptoms. I honestly believe a lot of what finally brings people to come off is the side effects of the drug that become more profound with time.  I had the shaking, mushy brain, floaters, tinnitus, apathy, depression, anhedonia and weak/tired issues long before I started my taper.  When I started, I cut almost half my dose in 5 weeks and was thrown into the depths of misery by destabilizing my system so rapidly.

 

I honestly believe that even if you are experiencing some of these, you can start very slowly and listen to your body and be fine doing a taper.  --V

 

Valley, I’ve never met you before, but I saw this support group off and on while I was on the first  Klonopin Klub Support Group.

 

It was at that time that I was crossing over to clonazepam from alprazolam that I printed up that complete list of side effects and that list was from the Mayo Clinic. My psychiatrist at that time had commented on my voice and how it had changed, so I wanted to see if anything on that list resembled what had happened with my voice. I found numerous listings about vocal problems, but since then with all these generic changes of clonazepam, I’ve found even more that now apply to me.

 

At that time, it was mainly the vocal problems. Now it’s many more. That comprehensive list of side effects is still available if one just Googles  “side effects of clonazepam Mayo Clinic.” Drugs.com has the same list also.

[[In...]]

Quoted from Intend

And I also printed off all the withdrawl effects of withdrawing from any benzo from Baylissa.com. So I’ve had all these side effects and withdrawals effects when I’ve tried to taper. This is no “fun” and it makes it hard to even tolerate clonazepam for me tapering or holding. I’ve known others like this. The benzo that they were prescribed just made them sick from almost the moment they took it, and then withdrawl was worse.

 

Every drug has side effects and pretty much withdrawl effects. Usually benzos are well tolerated, but benzos as a class of drugs, are not necessarily tolerated individually. So while I tolerated alprazolam w/o problems, clonazepam has been hard on me. I’m just hoping that as I taper down, more receptors will up regulate, and I will feel better. 

 

Hi Intend,

What you shared above really resonated with me. I too felt better on alprazolam and when my doctor told me she was prescribing clonazepam, even my husband was not keen on the idea and said I should stick with the alprazolam they gave me in the emergency room.  I was too overwhelmed and sick to listen.  I even felt better on Xanax the first time I was on benzos.  I'm not saying the taper would be easier but at least there was some initial benefit.

 

Clonzapam has never worked for me and there have not been any benefits to taking it.  It makes me depressed,  and if feel so tired from it.  The only way that will change is by slowly coming off and that is what I am determined to do.

 

Final,

 

There you are. Yep, it’s the side effects that I got from the Mayo Clinic list, and the withdrawl effects from Baylissa that has really shown me that overall I’ve never done well on clonazepam.

 

It’s all gotten so out of hand now that getting off this awful drug is going to be rough on me all the ways down.

 

I have no real anxiety whatsoever, but I do get those surges of morning cortisol, some depression that’s mostly started when I think of what has happened to me regarding ever going on clonazepam, and now so many physical sx.

 

I get upset and exasperated very easily now also, and can easily start getting teary eyed at the slightest thing. I’m just not me anymore and that makes me sad. 😢

[[Ma...]]

Valley, did you by any chance find anything that helped with your back, neck, and shoulder muscles?

Many of us on here right now are really struggling with our muscles  . Mary

 

Hi Mary.  I used some stretching, heating pads and a foam roller.  It's crazy how tense muscles get as we come off of these.  I also did take a lot of epsom salt baths.  I took nsaids infrequently. If you can do some light activity that also helps as we have a tendency to become couch potatoes during the taper which also keeps muscles tense up.  I do know how hard it is to do activity at times.  It was only sheer will that pushed me out the door to take walks.  Of course being careful not to get revved up too much.  Hope that helps a little.  --V

 

Thanks OK, until this last wave I was doing Treadmill and yoga, but I have just been in so much pain, it gets worse after I exercise.  I have been taking one ibu almost everyday and I just read a thread, does not work well with healing gaba, at least that is how I understood it.  U can't really trust my reading of medical information  .  This had been my most severe symptom, I desperately need to get it calmed down some. 

Hey MM I've been reading a little on the sidelines. Don't hold me to this but I'm pretty sure I read somewhere that one of the sxs of taking Valium was muscle soreness/ pain. Look up the sxs of Valium I'm almost positive that's one of them. So I'm wondering if you're just suffering a sxs of Valium itself and not taper related.

TT too many T'S TRISH ♥️

 

Hey T, yes it is, but I also had it with Xanax.  So I think it's both, side effects and withdrawal.  Sucks.

[[De...]]

Hi mmm,

I sm going to read that thread on ibuprogin. That is inreresting. I swear muscles were acting  normal until I started the new teva. Who knows  it could be a new sx. Rediculous! Can you fo light stretching. Does that hurt to much? I despise the muscle stuff. 

[[Ma...]]

Hi mmm,

I sm going to read that thread on ibuprogin. That is inreresting. I swear muscles were acting  normal until I started the new teva. Who knows  it could be a new sx. Rediculous! Can you fo light stretching. Does that hurt to much? I despise the muscle stuff. 

 

I need to get my last eye done and then will try very light exercise.  I am bad about once I start I forget word little or light.  Always want to do extra since I'm doing it.  I am just very unhappy that once again, my taper is struggling because of me.  Damn, sometimes I don't think I will ever learn.

How are you today DD?

[[De...]]

Ohh mm,

It is not tour fault. Nobody can figure out this drug. It makes no sense. Don't blame yourself.  I overdo it too with excercise. I want to have a real workout mot these getiatric workouts. judt tske it slow and see how your body feels. Especially the next day. Then heal. You will get stronger and stronger. I kno sucks. You got hit with a terrible wave, it will lift. I hate you are hurting. Im goung back.in and trying to find something for muclse pain. Make sure you are hydrated and getting electrolyesm 8 probably am dehydrated myselk. Drink water magnesium too. Love youuu dddd 

[[Ma...]]

Ohh mm,

It is not tour fault. Nobody can figure out this drug. It makes no sense. Don't blame yourself.  I overdo it too with excercise. I want to have a real workout mot these getiatric workouts. judt tske it slow and see how your body feels. Especially the next day. Then heal. You will get stronger and stronger. I kno sucks. You got hit with a terrible wave, it will lift. I hate you are hurting. Im goung back.in and trying to find something for muclse pain. Make sure you are hydrated and getting electrolyesm 8 probably am dehydrated myselk. Drink water magnesium too. Love youuu dddd 

 

Love you too DD 💜💜💜

[[Va...]]

V- your signature says you walked off at .5 with no symptoms.  So you are Benzo free and had no symptoms on your walk off?

~ meems

Yes.  I walked off with out any major problems. I have been off for about a year and a half and haven't had any lasting issues.  I was going to taper all the way to 0 but when I got down to .5 I wasn't feeling any symptoms so I just quit and was absolutely fine.  I think the hardest part for me was learning how to function with a clear mind after I walked off lol.  --V

[[Va...]]

Oh this is a beast.  I’m in a wave.  Yesterday was an ok day. Today I feel like I’m in that weird altered state in my brain.  I got my blood test this morning for glucose and lipid panel.  And I have to take my mom to her dr appt this afternoon which is causing me anxiety driving this way.  Then tomorrow, and guys I’m so scared, I gotta take Maggie my 14 year old cat to her a radioactive iodine treatment for her Hyperthyroidism.  And it’s a long drive.  The longest I’ve done in taper withdrawal.  Plus it’s emotional cause she’ll have to stay there for either 3-5 days or 4-7 days.  Ok, meems breathe.  I’m on the verge of tears.  This is too much.  I know we have to  be patient and have acceptance in our tapers but it’s so hard. Now I’m crying and it’s hard to type.  I’m in so much fear and pain and I’m sorry to be so dramatic. 

~meems

I'm so sorry about your cat Meems.  I am a cat lover as well.  Just remember you can usually do more than what your brain is telling you you can do.  I found that out many times during the taper when I had to work and drive long distances through the worst of it.  You will get past this.  --V

[[Ma...]]

Valley, in your list of symptoms, you mentioned muscle pain.  Can you tell me what you did for it?

It's always been my worst symptom.  Mary 

[[Tr...]]

Valley, did you by any chance find anything that helped with your back, neck, and shoulder muscles?

Many of us on here right now are really struggling with our muscles  . Mary

 

Hi Mary.  I used some stretching, heating pads and a foam roller.  It's crazy how tense muscles get as we come off of these.  I also did take a lot of epsom salt baths.  I took nsaids infrequently. If you can do some light activity that also helps as we have a tendency to become couch potatoes during the taper which also keeps muscles tense up.  I do know how hard it is to do activity at times.  It was only sheer will that pushed me out the door to take walks.  Of course being careful not to get revved up too much.  Hope that helps a little.  --V

 

Thanks OK, until this last wave I was doing Treadmill and yoga, but I have just been in so much pain, it gets worse after I exercise.  I have been taking one ibu almost everyday and I just read a thread, does not work well with healing gaba, at least that is how I understood it.  U can't really trust my reading of medical information  .  This had been my most severe symptom, I desperately need to get it calmed down some. 

Hey MM I've been reading a little on the sidelines. Don't hold me to this but I'm pretty sure I read somewhere that one of the sxs of taking Valium was muscle soreness/ pain. Look up the sxs of Valium I'm almost positive that's one of them. So I'm wondering if you're just suffering a sxs of Valium itself and not taper related.

TT too many T'S TRISH ♥️

 

Hey T, yes it is, but I also had it with Xanax.  So I think it's both, side effects and withdrawal.  Sucks.

Ahhhh ok.. well I wish you luck tomorrow with your eye. As our very own Stut would say you will be grand lady Mary 

♥️♥️♥️

[[Ma...]]

Valley, did you by any chance find anything that helped with your back, neck, and shoulder muscles?

Many of us on here right now are really struggling with our muscles  . Mary

 

Hi Mary.  I used some stretching, heating pads and a foam roller.  It's crazy how tense muscles get as we come off of these.  I also did take a lot of epsom salt baths.  I took nsaids infrequently. If you can do some light activity that also helps as we have a tendency to become couch potatoes during the taper which also keeps muscles tense up.  I do know how hard it is to do activity at times.  It was only sheer will that pushed me out the door to take walks.  Of course being careful not to get revved up too much.  Hope that helps a little.  --V

 

Thanks OK, until this last wave I was doing Treadmill and yoga, but I have just been in so much pain, it gets worse after I exercise.  I have been taking one ibu almost everyday and I just read a thread, does not work well with healing gaba, at least that is how I understood it.  U can't really trust my reading of medical information  .  This had been my most severe symptom, I desperately need to get it calmed down some. 

Hey MM I've been reading a little on the sidelines. Don't hold me to this but I'm pretty sure I read somewhere that one of the sxs of taking Valium was muscle soreness/ pain. Look up the sxs of Valium I'm almost positive that's one of them. So I'm wondering if you're just suffering a sxs of Valium itself and not taper related.

TT too many T'S TRISH ♥️

 

Hey T, yes it is, but I also had it with Xanax.  So I think it's both, side effects and withdrawal.  Sucks.

Ahhhh ok.. well I wish you luck tomorrow with your eye. As our very own Stut would say you will be grand lady Mary 

♥️♥️♥️

 

Lol, lol.  Thank you Too Many T's.  Be glad to have another thing to cross off!!  Tired off all this, have one of those magnetic things that stick to refrigerator to keep up with Dr appointments