WiggleIt: Tardive dyskinesia & dystonia from TCAs/nortriptyline/desipramine; rapid taper & benzo trouble, too

[luv2knit]

Dear, Wiggle--I am praying for comfort and peace for you right now. I know you are scared. Try to breathe and trust God. He is the one who will see us through this.

 

Everyone is different. I have the akathisia and did not get brain zaps. I have a friend on the Zoloft FB page who went off two weeks before I did who has nothing but brain zaps. I don't know, but I would think it very unlikely you would have TD and akathisia. As far as things getting worse--I too am scared when things seem to be getting worse, but I am trying to remind myself that it is all part of the windows and waves pattern of recovery. Your brain is healing, even during the waves. We are all here with you... and so is God!! Hang in there!

[WiggleIt]

I do not want to die, but I do not want to live like this.  Is this cruel joke really life?  I was put here to live only a short part of my life in joy, the rest of it in disabled misery, then death?  

[WiggleIt]

Okay, I just spent some time on benzobuddies.org reading recovery stories and I feel a little better and a little more hopeful.  There is a bigger collection of success stories over there than here, and since I'm clearly getting slammed by double withdrawal from tricyclics and benzos, I related to a lot of stuff over there.

 

Plus, I saw some things addressed there that haven't been addressed here.  Like, lots more people over there with myoclonic jerks, but several reports of jerks fading over time.

 

Still would love to know when my face-jerks will go away.

 

Also, people over there describing bladder pain and bladder urgency that also resolved.  Yay!

[WiggleIt]

Found more people on BB with myoclonic jerks. Some recovered, some not.

 

One person specifically stated that once they stopped worrying about their jerking, it abated.

 

I hope The Lord can guide me to this place of healing.

[Pugknows]

Hey WI, our journeys through this WD process seem very similar, ie. how we got started on psyche drugs, the emotional and psychological fears and torment, what we are doing to give ourselves hope (benzo buddies success stories). We seem to get so exhausted with the groundhog day grind of relentless symptoms, we think we'll never recover and are currently feeling the way we'll always feel. We keep forgetting that we never had these symptoms before WD. So we have to hold onto the logic that we WILL eventually recover from them. Hope and pray you get relief today. Keep your faith in God that He is healing all of us.

[luv2knit]

Wiggle, I initially experienced bladder pain and urgency, and that is one thing that has almost completely cleared up for me. I would have to run to the bathroom every 5 minutes, but would not be able to go. I drink quite a bit of water anyway, but tried to drink even more, and this seemed to help for me. I still have similar issues with bowels, and it is annoying, but since I am actually going at least once a day, I try not to worry, and just hope it will eventually resolve.

 

The myoclonic jerks are not unique to withdrawal. I had these in my legs in the beginning of my Transverse Myelitis. Initially, they would occur if I just touched my toe down to the floor. They got gradually better over time, but would still happen when I was especially stressed as long as several years out. I know--not exactly what you want to hear, but the point is, they happened less and less, and at a point when I would have thought they would be permanent, they finally did go away completely. (If you have not heard my story about this, I was completely paralyzed initially, so this probably took longer for me.)

[WiggleIt]

Hey WI, our journeys through this WD process seem very similar, ie. how we got started on psyche drugs, the emotional and psychological fears and torment, what we are doing to give ourselves hope (benzo buddies success stories). We seem to get so exhausted with the groundhog day grind of relentless symptoms, we think we'll never recover and are currently feeling the way we'll always feel. We keep forgetting that we never had these symptoms before WD. So we have to hold onto the logic that we WILL eventually recover from them. Hope and pray you get relief today. Keep your faith in God that He is healing all of us.

Thank you so much, Pug. You are an amazing person.

[WiggleIt]

Wiggle, I initially experienced bladder pain and urgency, and that is one thing that has almost completely cleared up for me. I would have to run to the bathroom every 5 minutes, but would not be able to go. I drink quite a bit of water anyway, but tried to drink even more, and this seemed to help for me. I still have similar issues with bowels, and it is annoying, but since I am actually going at least once a day, I try not to worry, and just hope it will eventually resolve.

 

The myoclonic jerks are not unique to withdrawal. I had these in my legs in the beginning of my Transverse Myelitis. Initially, they would occur if I just touched my toe down to the floor. They got gradually better over time, but would still happen when I was especially stressed as long as several years out. I know--not exactly what you want to hear, but the point is, they happened less and less, and at a point when I would have thought they would be permanent, they finally did go away completely. (If you have not heard my story about this, I was completely paralyzed initially, so this probably took longer for me.)

Knit, your words are hopeful. I am familiar with story, but it slipped my mind about the transverse myelitis. It is good to know the bladder pain is greatly improved, and also excellent to know the jerks eventually cleared. I will wait years, as long as it resolves. I may not wait gracefully, but I will wait.

 

I finally got to sleep last night after telling God that I will accept whatever he hands me.

[luv2knit]

Not quite as bad as it sounds. The worst for me was probably the first year. It took both of my parents in two separate nursing homes at the same time and dying 5 years later to stress me enough to bring it back temporarily.

[Cdav]

Hi Wiggle. 

 

I've also had the same thought and feeling about just being put in this life to enjoy a few years and the rest of them would only be misery. But this is absolutely not true. For me it's been a very long and painful journey but there has been improvement. Our minds are very powerful and if we feed them each day with ideas about never recovering (or getting new symptoms that we don't have right now), it is less likely that we will recover. I think we need to tell ourselves each day that we will get our health back, even if it feels like we won't. 

[Pugknows]

((((Wiggle)))) We are gonna make it through all this. When I go to bed at night, I actually look forward to waking up the next day to see if I'm "there" yet. So far, nope. But one day I will.

[WiggleIt]

Whine whine whine

 

Sad sad sad

 

Scared scared scared

 

Feels like my right leg is getting twitchier than usual. So much for being grateful that I was not getting too much RLS...maybe if I say the rosary until I fall asleep...

[Wildflower0214]

I had the jerks for a long time Wiggle. I also had sensations from hell, which up until recently went away.

 

I really really believe you will be alright, but unfortunately, I think many of us are going to be hanging around this forum a lot longer than we would like.

 

I'm 30, and I dont really expect this to end until I'm 35... I figure then, I will at least be somewhat functional and relatively sane.

[Wildflower0214]

The thing that frightens me is that I have no family except my parents who are 67 and 69. I really have no one but them. I have friends, but I can't move in with them while I'm nuts. And, I would never want to impose on them. Most of them have small children and are married.

[WiggleIt]

Oh, JDM, I have the exact same situation with parents the same age, so I worry as they age and I get sick.

[WiggleIt]

I am turning into the type of person whose threads are I pleasant to read. I realize after joining benzobuddies.org and reading about cases there that I am definitely in double to triple withdrawal.

 

I also realize that I am not likely to heal 100% based on my medication history and cold turkeys. I am not likely to be grateful for a partial recovery, but I will simply live handicapped for the rest of my life because I will have no other choice.

 

I also know now that I am likely to develop food intolerance and multiple chemical sensitivity years later. So, it's just going to be a **** life piled on top of more ****.

 

Also, seems like plenty of people get worse the further they get from their cold turkeys, so I also have that waiting for me.

 

I don't wish I were dead, but I can't say I'm grateful for this life, either. There are people in it I love and am grateful for, but I know that this is a bad life and I know that I am less than half of what I used to be and that I will never accomplish my life goals. That's just all there is to it and I'm tired of fooling myself.

[Pugknows]

((((WI)))) I can hear how defeated you feel right now. You've been reading other people's stories that are bringing you down. I've done that. Still do it. You are projecting their situations onto yourself. There is no evidence, anecdotal or otherwise, that CT dooms you to permanent damage. Don't let your imagination destroy your hope. These are WD emotions. You will heal 100%. How you come off these drugs has nothing to do with forecasting your recovery. Read the threads of those who are tapering. Every time they make a small drop in dosage, they have symptom problems. The drugs are out of your system and you are healing. You will recover from this. You are not doomed.

[Pugknows]

What symptoms are you dealing with right now?

[westcoast]

WiggleIt, just wanted to say that I had the jerking awake from sleep with gasping breaths, and pounding heart, usually at 1:15am, for many months. It started in March 2013 and I think it had gradually stopped happening by fall of 2013. All my physical symptoms, which included hands and feet cramping up painfully, are gone now expect in occasional mild manifestations. So it does seem that things can get better, but it takes a long time.

[WiggleIt]

I found something to be truly grateful for: I did not die coming off of lorazepam, and I could have. God must have been there.

[Wildflower0214]

Wiggle. I have a CT from the worst AD, Effexor. I am also stuck on Ativan.

 

I still have to taper it. I really do think you will get better. But, like I said, I think we are gonna be here a long while.

[westcoast]

I'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

[luv2knit]

((Wiggle)). I don't think there is any reason to think you will not eventually heal completely. There are many on multiple drugs who have healed. If cold turkey is the issue, then that means I will not heal either, because I was basically cold turkey. I'm not ready to give up yet. So sorry you're feeling so defeated, but I honestly think it is the withdrawal talking.

[Pugknows]

((((WI)))) I'm CT also. If you and Luv are screwed, then I am too. We are just discouraged and exhausted. Our outlook is bleak because this misery goes on all day and bleeds into the next day. Nobody can tell us how long we have to endure this, so we automatically jump to the worst case scenario: FOREVER! But it will end. One day we will wake up and something will have lifted, or maybe our baseline will have been raised. Maybe it will happen right after a bad wave that brought us to our knees and we thought we couldn't go on another day. The very next day could be the day it happens for all of us. You've got to just push through every day and not buy into the "cr*p" some people post on their blogs. Just because you are honest, it doesn't mean they are, or some people intentionally or unintentionally leave certain facts out of their posts, like other things they are taking, for instance. Don't believe everything you read. Some people seem to have a flair for the dramatic and are insensitive about saying things that might put a nice person like you in the pit of despair. I'm here to tell you that we are ALL going to HEAL 100%, regardless of our ages, or how long we were on the drugs, or the dosages we were on, or how we quit the drugs, or whether we're still on something and tapering. God is with us because we are TRYING. We aren't out driving around high, being a danger to ourselves and others. We are down on our knees begging Him to help us and He's listening. As a matter of fact He's helping us now. We just can't see it because we're still so miserable in our weakened state. Someday God's going to help our bodies take a giant last leap forward and this nightmare will be OVER.

[WiggleIt]

I'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

 

Thank you, that's very sweet.  Nothing should have happened to ANYONE here.  I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.   

[WiggleIt]

((Wiggle)). I don't think there is any reason to think you will not eventually heal completely. There are many on multiple drugs who have healed. If cold turkey is the issue, then that means I will not heal either, because I was basically cold turkey. I'm not ready to give up yet. So sorry you're feeling so defeated, but I honestly think it is the withdrawal talking.

 

Thanks, Knit.  If it's the withdrawal talking, I can learn to control it.  It's the physical and cognitive symptoms that I have no control over if they don't repair themselves.

[chicken]

 

I'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

 

Thank you, that's very sweet.  Nothing should have happened to ANYONE here.  I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.   

 

I soooo agree. If I had known about magnesium years ago I could have avoided a world of drugs.

[WiggleIt]

((((WI)))) I'm CT also. If you and Luv are screwed, then I am too. We are just discouraged and exhausted. Our outlook is bleak because this misery goes on all day and bleeds into the next day. Nobody can tell us how long we have to endure this, so we automatically jump to the worst case scenario: FOREVER! But it will end. One day we will wake up and something will have lifted, or maybe our baseline will have been raised. Maybe it will happen right after a bad wave that brought us to our knees and we thought we couldn't go on another day. The very next day could be the day it happens for all of us. You've got to just push through every day and not buy into the "cr*p" some people post on their blogs. Just because you are honest, it doesn't mean they are, or some people intentionally or unintentionally leave certain facts out of their posts, like other things they are taking, for instance. Don't believe everything you read. Some people seem to have a flair for the dramatic and are insensitive about saying things that might put a nice person like you in the pit of despair. I'm here to tell you that we are ALL going to HEAL 100%, regardless of our ages, or how long we were on the drugs, or the dosages we were on, or how we quit the drugs, or whether we're still on something and tapering. God is with us because we are TRYING. We aren't out driving around high, being a danger to ourselves and others. We are down on our knees begging Him to help us and He's listening. As a matter of fact He's helping us now. We just can't see it because we're still so miserable in our weakened state. Someday God's going to help our bodies take a giant last leap forward and this nightmare will be OVER.

 

Pug, I am worried that I am becoming one of those people who is so negative that nobody will want to read my posts anymore.  I worry that I am turning into one of the types of cases who scares others.

 

I would never, ever want to hurt others by talking about my own despair.  I just don't know what to do with my own despair.  And I sure as hell don't know what to do when the Big Wiggles happen.  They happened yesterday.

[Wildflower0214]

Also, Wiggle, a lot of people do impove a lot, but they come back and because they aren't completely healed, they say that nothing ever got better. But, then you go to the beginning of their thread and they were obviously suffering quite a lot, and then you look at where they are now and they are working part time...!!

And you're like.... Huh? Working part time is a lot different than complete insomnia and thrashing in misery on the floor. But, somehow they miss this. So, some people are just not telling the full story.

[WiggleIt]

 

 

I'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

 

Thank you, that's very sweet.  Nothing should have happened to ANYONE here.  I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.   

 

I soooo agree. If I had known about magnesium years ago I could have avoided a world of drugs.

 

 

Chicken, can you remind me your original reason for being put on meds?

[Wildflower0214]

 

 

 

 

 

 

I'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

Thank you, that's very sweet. Nothing should have happened to ANYONE here. I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.

I soooo agree. If I had known about magnesium years ago I could have avoided a world of drugs.

Chicken, can you remind me your original reason for being put on meds?

Ya, I needed a good trauma therapist and my hormone imbalance corrected.

[chicken]

 

 

 

I'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

 

Thank you, that's very sweet.  Nothing should have happened to ANYONE here.  I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.   

 

I soooo agree. If I had known about magnesium years ago I could have avoided a world of drugs.

 

 

Chicken, can you remind me your original reason for being put on meds?

 

I was put on them for anxiety. Some of my anxiety was pretty bad, even without meds. Magnesium helped so much when I went through my Cipro/Remeron event, leading me to believe that it would have helped all along without meds.

[WiggleIt]

Not quite as bad as it sounds. The worst for me was probably the first year. It took both of my parents in two separate nursing homes at the same time and dying 5 years later to stress me enough to bring it back temporarily.

 

Knit, does it ever come back anymore at high times of stress?  I am stunned and scared that it was still able to happen five years later.    

[WiggleIt]

 

 

 

 

I'm grateful you're here on SA supporting yourself and others. Your story should never happen to anyone. And you weren't even on the meds for psychiatric reasons.

 

Thank you, that's very sweet.  Nothing should have happened to ANYONE here.  I think mental health issues are epidemically overdiagnosed and I would hazard to bet that probably only 1% of people out there have true schizophrenia or psychosis that is severe enough to possibly justify medication.

 

I feel like the people here who I have met who talk about the psychiatric reasons they were put on meds all seem like wonderful people who were suffering from things that could have been helped with enough time, patience, and support from resources OTHER than medication.   

 

I soooo agree. If I had known about magnesium years ago I could have avoided a world of drugs.

 

 

Chicken, can you remind me your original reason for being put on meds?

 

I was put on them for anxiety. Some of my anxiety was pretty bad, even without meds. Magnesium helped so much when I went through my Cipro/Remeron event, leading me to believe that it would have helped all along without meds.

 

 

Wow...

[luv2knit]

 

 

Not quite as bad as it sounds. The worst for me was probably the first year. It took both of my parents in two separate nursing homes at the same time and dying 5 years later to stress me enough to bring it back temporarily.

Knit, does it ever come back anymore at high times of stress? I am stunned and scared that it was still able to happen five years later.

[luv2knit]

No, it does not come back. Even withdrawal has not brought it back. I have had tremors, but these are mainly in my upper body, and not the same.

 

I also had considerable nerve damage, which I still have deficits from, but I also continued to see improvements in that area for well over 5 years. The common thought with that is you see whatever improvement you're going to see in two years--not true--not even close.

 

((Hugs))