TNTD: Wellbutrin: cold turkey due to debilitating side effect

[tntd]

About nine days into moving my clonazepam around my anxiety went way down. That was nice. I still have the agoraphobia but it isn't quite as bad, I think. Now I have extreme exhaustion and my muscles feel really weak, possibly jelly legs situation. I brushed my dog and when I was done I felt like I was going to fall down because my muscles were so weak and trembling. I was so exhausted I went and lay down with my meditation track and though I thought I might sleep I didn't. I still have just enough anxiety to cause me to have adrenaline surges when I start to doze off. 

 

I had an appointment with my pdoc yesterday. It went well. He likes the system that Wellness has suggested for moving my doses and he likes that I am going to hold for a couple of weeks after I have everything settled. He also thinks my symptoms are tolerance to the benzo and that I won't get better until I'm off the drug. So I've set a date to start my taper and hopefully everything will go well and I will be able to start my taper then. From everything I've read tolerance symptoms only get worse the longer you are on the benzo, or unless you updose, which I'm not going to do. It's already going to take a long time to get off of it.

 

I actually haven't been feeling to bad the past few days. Exhaustion, headahce, and cog fog have been my biggest symptoms. It has been nice to have a reprieve from the extreme fear I've been feeling. This morning I didn't even really have the adrenaline surges though the anxiety does ramp up a bit stil. I was experiencing a relief of the early morning symptoms before I started moving my benzo around but the symptoms came back. I'm glad they appear to be leaving again. I guess I will just have to wait and see if they stay gone. Even so I still can't sleep past a certain time becaue the anxiety is just enough to not let me sleep anymore. I'm wondering how this is going to be affected when I start tapering the benzo.

 

I'm excited to get going on the tapering and scared at the same time. I'm hoping for the best though.

 

Hugs and healing to all 

[scallywag]

Three cheers for anxiety gone AWOL. Let's hope it stays lost.

[tntd]

Thanks Scallywag. I would love for it to stay lost. 

 

Today I have had a little higher anxiety but not unmanagable. I've been able to do things around the house like laundry and dishes. Still having a lot of fatigue. I use a fitbit to chart my sleep at night and it says I'm getting about six hours of sleep but I'm so restless all night that it looks like I've been in jail all night. Even on nights when I actually get good sleep I wake up exhausted. I assume it's the meds. It wasn't this bad before I started migrating the benzo doses but I understand that fatigue is a benzo withdrawal symptom. Seems counterintuitive but these drugs are messing with our brains so badly it's hard to know what will happen next.

 

I had hoped that when the anxiety reduced the agoraphobia would too. Unfortunately it has not and today I'm feeling even more anxious about leaving the house. Maybe it's because I have a chiropractic appointment tomorrow so I know I'm going to have to leave the house. Just typing that up increased my anxiety, so yeah. 

 

I tell myself everyday that I can do this. I am strong. Take one day at a time, one moment at a time and I will get through it. I also try not to think of the upcoming benzo taper much because that causes a lot of fear all by itself. Every time I prepare my doses though it's in my face and I have to deal with the emotions it brings up. I can do this. 

 

It would probably be easier if I didn't already have experience with withdrawal. I am also concerned that starting my benzo taper will make my burproprion CT symptoms worse. Only time will tell and I try to keep my mind on other things.

 

I hope everyone is experiencing good healing. 

[tntd]

I went into a window on Sept 19th and it got so good that on Sept 24 I almost felt 100% me!! It sure did give me hope. Even the agoraphobia went away for a day. I went out to the library and a couple of other places with my husband and was fine the whole time. I did start to get tired, probably because I'm not used to being up and out and around that much activity. It was so nice though. 

 

That night my daughter and her boyfriend hung out at our house and we ended up staying up until 1:00am. The next day was not nearly as good. I still can't sleep in because of the morning anxiety so I was really tired and that made my anxiety and agoraphobia increase. I still felt like I was in a window though, just really tired and of course our symptoms flare a bit when we don't get enough sleep. 

 

Today I'm having another increase in anxiety and agoraphobia so it looks like my window may be closing. I would be happy if it stayed here though. I was able to take my dog for a walk this morning and practice some mindfulness. Then when I took her to the back yard to go to the bathroom I was able to stay outside and do some weeding. Not a lot but some and I have to be the right frame of mind, low to no anxiety, or it doesn't happen at all. I'm so grateful for the windows. 

 

Hugs and healing

[downtongirl]

Yay!  so happy for you T!  What do you think made the positive difference?

[tntd]

Hi DG,

 

I don't think there was anything specific that made the difference. I do notice that I tend to have windows at a specific time in my cycle and that is where the window was this time too. It was the longest window yet though so that was nice.

 

I did start moving my clonazepam around and that might have made some difference but I don't know for sure. My doses are still far enough apart that I'm still getting some interdose withdrawal so I'm not sure moving the doses had any effect, it might have just been because my brain was in a good place. Time is the healer they say. 

 

I'm back in a wave now. I've been having "waves" of intense anxiety throughout the day. I'm also super tired and achy, along with forgetting what I'm doing so my cognitive functions are haywire too. 

 

I see that things are starting to get a little more rough for you recently too. I'm sorry to see that. This withdrawal stuff isn't for the faint of heart, especially if we did a fast taper or CT. Here's hoping for a lot more windows, and longer windows, for all of us.

 

Hugs and healing

[ravijaua]

So they put you on buproprion for trying to come off klonopin too fast, then ct'd it. OMG these doctors.

[tntd]

Hi ravijuaua,

 

Sounds like you are having a rough time of it. It's so frustrating, especially because it is so hard to handle every day.

 

I did have doctors cause me problems but not quite the way my signature seems to portray it. They put me on buproprion and wouldn't listen to me when I told them it was making me super anxious and agitated. Turns out the k was helping to subdue akathisia so when they decided I didn't need the K anymore and decided to cut it, she wanted 50% I did 25%, it got a lot worse. Changed doctors and he knew the buproprion was trouble so he tried to "taper" me off of it but when I got super depressed and apathetic he said I was having a relapse and reinstated it. I eventually ended up with full blown akathisia from the buproprion and nothing but a CT from the buproprion would help.

 

If they had just listened, and believed me, when I told them it was causing me problems when they first put me on it this never would have happened. Well, I shouldn't say never, I'm sure they would have tried some other med and then who knows what would be going on now. 

 

I hope you are having a better day.

 

Hugs and healing

[tntd]

My wave has gotten really bad. I've been sitting in front of the computer all day and texting as well. It has helped keep the anxiety at bay to some extent but I really need to take a shower and I'm struggling to make myself go do that. 

 

My wonderful husband made a grocery list and is out shopping now. He'll probably make dinner when he is done. I've been crying a lot today. I haven't done that in awhile. It's exhausting. 

 

I've also been hiding in the basement all day. Unfortunately that means I also didn't walk the dog today, or yesterday actually. It has been raining both days so that's my excuse. I always sleep better when I think I don't have to walk the dog in the morning. Anticipatory anxiety due to agoraphobia I'm assuming. My husband often gets a walk in with her so she is getting some exercise at least. She used to get a bike ride everyday when the weather is nice. We used to take her on 20 mile bike rides, she has her own little cart so she doesn't get too tired. She absolutely loved running and would cry when we would put her in her cart. People must have thought we were torturing her. I really missed that this year. Unfortunately she is on the older side and by the time I get better she may not be able to go for bike rides anymore. She already has really bad arthritis. I think the bike rides were keeping it at bay because she got bad really fast once she stopped getting her regular exercise. It makes me feel guilty even though I know it's not my fault. 

 

I can't wait to get my benzo taper under way so I can get through this and maybe start to see some light at the end of the tunnel. It's hard when you know the taper itself is going to take years as many of you know. It might not be as bad if it weren't for the CT though. I'm hoping the benzo taper doesn't make those symptoms worse. I wish I could wait on the benzo taper but my symptoms from it are just getting worse and I don't want to squander my time before three doses doesn't prevent interdose withdrawal anymore. I'm just reaching the point where I'm not getting it anymore and that is nice at least.

 

One day at a time. Trying to look past this to when I will be able to do the things I enjoy again. Or just being able to leave the house when I want to would be good

[tntd]

Still in a really bad wave. I'm not having the morning cortisol surges at the moment, which is nice, but as soon as I wake up my anxiety ramps up to almost unbearable levels. It makes me want to go back to sleep but that never works. I find myself rocking on the couch trying not to fly apart. Chest pains as well. I know it's all from the anxiety. 

 

My DBT group is starting up again tomorrow and I'm wondering if that is what is amping up my anxiety. My agoraphobia is unrelenting and the thought of having to go out to a group appointment is just causing the anxiety to ramp up off of the agoraphobia. I was having a hard time going before the three week break we took. It is very frustrating because it is always good when I get to be with the people in the group. We have gotten to be close and there is a comaraderie there.

 

I tried to persuade myself to take my dog for a walk this morning but couldn't even do that She isn't happy about it either.

 

I've been sipping magnesium citrate all day but it hasn't helped much. Distracting on the computer has helped a bit.  

 

As I'm sitting here writing this I'm thinking of all my coping skills. Breathing, accepting, noting, meditation, writing, journaling, changing the channel, being mindful. I would say CBT but I'm not finding any specific thoughts associated with the anxiety. I'm just assuming it's the DBT class tomorrow. 

 

I'm also on the dark side of my cycle so a lot of it could be hormonal anxiety which I have had problems with for years now. When it gets added to my withdrawal anxiety it has gotten this bad in the past. I just keep hoping that as time goes by it will get better. It was for a little while and then things went backwards in my waves. They were light waves with just a couple of days of really bad and then they switched around to just being really bad. 

 

This wave has also included a lot of crying spells, muscle spasms, and GI problems. Stress eating has ensued. You would think the GI problems would prevent that, oh well. 

 

I'm still in the process of moving my clonazepam doses around but they are getting close to being set so I wouldn't think that would cause any problems, though who knows. 

 

Having a little more trouble looking past this to being healed and it's hard to stay positive. One day at a time...

[tntd]

I thought the wave was getting better but I woke up today with more terror than anxiety. I've been crying off and on all day. None of my coping skills are keeping the terror at bay. 

 

I was so hoping for a break. I want to go out, I would love to run some errands with my husband. Instead I sit in front of the computer trying to distract myself from the almost unbearable anxiety. How can we experience such high levels of anxiety and not fly apart? Sometimes I just have to sit on the couch and rock back and forth while I have my arms wrapped around myself because nothing else is helping. 

 

The first thing I did this morning was meditate. I had multiple andrenaline surges during the meditation so it wasn't very relaxing. Breath, just keep breathing, as I sit here with tears streaming down my face. I feel so alone and lost. 

[Shep]

Hi, tntd. 

 

I'm sorry you're struggling so much right now. You mentioned DBT in your earlier post - "My DBT group is starting up again tomorrow and I'm wondering if that is what is amping up my anxiety. "

 

Do you think taking a break from this might help? You are doing so many healthy non-drug coping skills, such as mindfulness, so perhaps for now, that may be enough. You can always return to DBT when you're not so fragile. 

 

Stress eating may also be adding to this. My diet is so restricted right now because even the smallest amount of sugar or caffeine causes massive waves. 

 

Nurture your CNS right now. Comforting things like peaceful music, gentle yoga, and thoughts that this is temporary and you will heal.

 

When I was going through benzo withdrawal, the fear was extreme. There really are no words for it. And no non-drug coping skill could mask the horror. I simply had to find ways of distracting to get through it.

 

This is one of my favorite threads about what you can do:

 

"Change the channel" -- dealing with cognitive symptoms

 

Sending healing vibes your way. This will get better. 

[NaturalBorn]

I thought the wave was getting better but I woke up today with more terror than anxiety. I've been crying off and on all day. None of my coping skills are keeping the terror at bay. 

 

I was so hoping for a break. I want to go out, I would love to run some errands with my husband. Instead I sit in front of the computer trying to distract myself from the almost unbearable anxiety. How can we experience such high levels of anxiety and not fly apart? Sometimes I just have to sit on the couch and rock back and forth while I have my arms wrapped around myself because nothing else is helping. 

 

The first thing I did this morning was meditate. I had multiple andrenaline surges during the meditation so it wasn't very relaxing. Breath, just keep breathing, as I sit here with tears streaming down my face. I feel so alone and lost. 

god, sorry to hear tntd, this is what is scary about this situation, the improvement is not linear,but try looking at this way, you might have noticed that one or another symptom has decreased right? if so, try reminding yourself that anxiety will too. i know that this will not take the anxiety away, but keep on going, i'm really wishing the best for you.... sorry i don't have much to say haha, gonna be praying for you.

 

i really think that when all this is over we are going to be stronger persons

[tntd]

Hi, tntd. 

 

I'm sorry you're struggling so much right now. You mentioned DBT in your earlier post - "My DBT group is starting up again tomorrow and I'm wondering if that is what is amping up my anxiety. "

 

Do you think taking a break from this might help? You are doing so many healthy non-drug coping skills, such as mindfulness, so perhaps for now, that may be enough. You can always return to DBT when you're not so fragile. 

 

Stress eating may also be adding to this. My diet is so restricted right now because even the smallest amount of sugar or caffeine causes massive waves. 

 

Nurture your CNS right now. Comforting things like peaceful music, gentle yoga, and thoughts that this is temporary and you will heal.

 

When I was going through benzo withdrawal, the fear was extreme. There really are no words for it. And no non-drug coping skill could mask the horror. I simply had to find ways of distracting to get through it.

 

This is one of my favorite threads about what you can do:

 

"Change the channel" -- dealing with cognitive symptoms

 

Sending healing vibes your way. This will get better. 

Hi Shep,

 

Thank you so much for you supportive response. 

 

I have thought about stopping my DBT but it is one of the only things that gets me out of the house and I get to socialize a little. I actually feel very safe once I get there. I would hate to lose my one way to socialize outside of my house since I'm so agoraphobic. I might be the smart thing to do but I'm going to see if I can continue for a bit yet. I did talk to one of the facilitators about it though so she is aware that I may not be able to keep going. The people that are part of the group have become like family so that is one of the reasons I don't want to stop. They are so supportive too. 

 

Stress eating, lol. I agree it could be causing me problems. We eat a mostly paleo diet so my stress eating is mostly things like nuts and plantain chips. Though they are higher in carbs than I usually eat. I am wondering though if what I ate last night may have caused me this huge upswing in anxiety. We ordered in and had Buffalo Wild Wings. No idea what is in the sauces. Though I have to eat gluten free as I have a gluten sensitivity. My husband ended up with a migraine from it. We thought it was a migraine trigger for him so we were checking it. I'm just trying to remember if I had more anxiety the next day too. I want to say I did but I don't know if I can trust my memory. 

 

I really need the thoughts that this is temporary and I will heal because it so doesn't feel like it right now. I almost need to turn that into a mantra. 

 

I'm sorry to hear that you had to go through the benzo horror too. You are one of a few people who have told me and validated my experience that the coping skills just don't work on the horror of the anxiety. Distraction is the only thing that even helps and sometimes it doesn't work as well as usual. 

 

I have read the changing channel thread and I really like it. I have used it when I am able to take my dog for a walk and my mind starts wandering. It's a lot easier to look at the trees and the leaves and focus on my steps and my dog. I love it when she says think about kitties. I've done that too. I will go back and read that thread again. Thank you for the suggestion. 

 

Congratulations on being med free. 

 

Thank you so much for your post and the healing vibes. 

[tntd]

 

I thought the wave was getting better but I woke up today with more terror than anxiety. I've been crying off and on all day. None of my coping skills are keeping the terror at bay. 

 

I was so hoping for a break. I want to go out, I would love to run some errands with my husband. Instead I sit in front of the computer trying to distract myself from the almost unbearable anxiety. How can we experience such high levels of anxiety and not fly apart? Sometimes I just have to sit on the couch and rock back and forth while I have my arms wrapped around myself because nothing else is helping. 

 

The first thing I did this morning was meditate. I had multiple andrenaline surges during the meditation so it wasn't very relaxing. Breath, just keep breathing, as I sit here with tears streaming down my face. I feel so alone and lost. 

god, sorry to hear tntd, this is what is scary about this situation, the improvement is not linear,but try looking at this way, you might have noticed that one or another symptom has decreased right? if so, try reminding yourself that anxiety will too. i know that this will not take the anxiety away, but keep on going, i'm really wishing the best for you.... sorry i don't have much to say haha, gonna be praying for you.

 

i really think that when all this is over we are going to be stronger persons

 

Hi NB,

 

Thank you so much.

 

You are right that many of my physical symptoms have decreased. Unfortunately the one that stays the most and that only seems to decrease when I'm in a window is the anxiety, well the agoraphobia too. I think a lot of it has to do with the benzo I'm taking. It's really screwing me up. I took it many years ago when I first developed panic disorder and then when I was put on it again last year I think it kindled my brain and I developed a tolerance to it very quickly. Now I'm just moving it around and it's causing all sorts of withdrawal symptoms. They seem to be worse than when I CT'd buproprion but the mind is a tricky thing and I don't know if I am remember it correctly. 

 

I keep trying to tell myself that this will improve and I will get better, but as you know sometimes it is hard to believe.

 

Thank you so much for your support NB, it really means a lot to me. Thank you for your prayers too. I hope you've had a better day today.

 

Hugs

[Shep]

 

Stress eating, lol. I agree it could be causing me problems. We eat a mostly paleo diet so my stress eating is mostly things like nuts and plantain chips. Though they are higher in carbs than I usually eat. I am wondering though if what I ate last night may have caused me this huge upswing in anxiety. We ordered in and had Buffalo Wild Wings. No idea what is in the sauces. Though I have to eat gluten free as I have a gluten sensitivity. My husband ended up with a migraine from it. We thought it was a migraine trigger for him so we were checking it. I'm just trying to remember if I had more anxiety the next day too. I want to say I did but I don't know if I can trust my memory. 

 

 

 

Hi, tntd.

 

Do you think there might have been MSG in the sauce? I have to avoid MSG because it can seriously cause problems, even just a little amount.

 

Just a thought, as MSG can cause those types of huge upswings in anxiety.

 

I hope today is a better day. 

[tntd]

Hi Shep,

 

Thanks for checking in with me. Unfortunately today hasn't been much better. 

 

It's funny, we're usually really careful about MSG because it gives both my husband and our daughter migraines but we didn't even check so it is a possiblity. We have decided that it is not a place we are going to eat anymore though. 

 

I just started reading your thread. You sure did have a rough time of it. I'm sorry to hear that you were so polydrugged for so many years and I am glad that you are here now and seem to be doing so much better. I really appreciate your comments and experience. 

 

I am currently reading Anatomy of an Epidemic. I do find it a little harder to follow and I'm not sure how much I'm actually retaining because of my cog fog but it sure is an eye opener!! It's hard to believe how much they lie to themselves, let alone to us, about these drugs and what they do. 

 

I also just read an article from Mad In America called "Stopping SSRI Antidepressants Can Cause Long Intense Withdrawal Problems. My pdoc keeps telling me he has never seen anyone go through withdrawal from an AD like I have. Of course I also refused all new meds he tried to give me so that could be making a difference. On top of that we aren't sure what is AD withdrawal anymore and what is benzo tolerance. The one thing I did agree to was an increase in my clonazepam when I was first in withdrawal. It helped but only for a very short while. When I have read back through my journal I can see that maybe it helped for about a month and then I was about the same as I had been before.

 

I did start to get some good windows and lighter waves and then I hit a wall for some reason and my waves have been just like they were in acute withdrawal. I went a whole month without a window, though I had one about two weeks ago. I started moving my benzo doses around due to interdose withdrawal and this wave has been awful since day one. Yesterday was the worst though. I don't know about anyone else but it feels like the longer we are in a wave, especially a bad wave, the harder it is to stay positive and to remember that this is just withdrawal and it will pass. My brain keeps trying to tell me this is just the way I am now.

 

I may have mentioned that earlier. I don't think I remember half of what I post on my thread. I find it a good place to vent though so I probably repeat myself and I'm feeling very frustrated right now. I really admire those who have gone through this and gotten to the other side. Especially those who have suffered for months on end with no windows to help them see any light. 

 

I think the anxiety and agoraphobia are the hardest for me. They isolate me so much. If it weren't for my husband and daughter I would be alone everyday. I do have a dog who keeps me company but I have a hard time taking her out or walking her and that makes me feel guilty. She's such a sweetie. When the waves were lighter I was walking her every day and even in the evenings with my husband. The agoraphobia started increasing again pretty badly in August I believe. So the evening walks were out but if I force myself out the door first thing in the morning I can sometimes take my dog for a walk. It just depends on how bad the anxiety it right away. Morning cortisol and anxiety and all. 

 

Shep, Thanks so much for your concern. I really appreciate it. 

 

{{{Hugs}}}

[tntd]

I'm still having severe anxiety and agoraphobia. These two symptoms seem to stay with me all the time. They have gotten worse since I moved my doses around. I assume I'm still having withdrawal symptoms from the movement of the doses. I moved them faster than I intended and it has only been six days since they have been put where I will keep them.

 

I do worry about losing some of my dose when I'm using the liquid. I rinse my syringes and the jars I'm dosing from to try to make sure to get all of the medication but I still wonder if I'm losing some. Even if I am will it make a difference because it's probably the same amount on a daily basis. 

 

I had an appointment with my psychologist yesterday and I had my DBT group. The agoraphobia made it really hard to leave the house but I prevailed, though not without a lot of tears and and the desire to return to the safety of my home.

 

I'm not sure my psychologist is much help. He keeps telling me that to help with the agoraphobia I should get out and do things. Everything I've read about in reference to agoraphobia in withdrawal is not to do that because it stresses the CNS more which slows the healing. Plus, even when I did manage to get myself out on a daily basis to walk the dog it didn't decreased the amount of fear I experience with this activity in the least. I also go to the hospital for appointments on a weekly basis and the only time my agoraphobia about going is any different is if I'm in a window or my wave has gotten lighter. It's frustrating because I don't think he understands. We talk about it being chemical and not emotional and that's why it doesn't have the same effect to go out and "face my fears" but he still seems to think that's what I should be doing. Since he works with people going through benzo withdrawal you would think he would understand that. I guess part of the problem is that we are all different in the way it affects us. 

 

I've been in a pretty bad wave for almost three weeks now. I haven't been sleeping as well since I moved my doses and when I wake in the morning, despite the high level of anxiety I'm feeling I just don't want to get up. I will lay there and try to meditate, do some deep breathing, even do some mindfulness. The anxiety just keeps going up. I don't understand why it keeps going up despite using all of the coping skills I'm employing. Getting up doesn't help either, until I start to find ways to distract myself.

 

It is getting colder out and the chill seems to make my anxiety worse. So I really don't want to take my poor fur baby for a walk. I've been putting her on the treadmill periodically. She would prefer to be outside but then I would prefer not to be experiencing this horrific withdrawal. We would both be a lot happier if I was me again. Even in this chill weather I would take her for a bike ride. We were both so much happier. 

 

I want to scream and cry, when will this be over? When will I get me back? I'm so terrified of everything right now and it's hard to see my way through to the other side. Sometimes I even wonder if there is another side and then I look at the survival stories and I know there is. Many of you have gone through so much and you have survivied. 

 

This withdrawal feels like psychological torture for me. Will I get another window? Will I be able to experience life and the joy that it brings again? This is my favorite time of year. Halloween is my favorite holiday, it's just so much fun. Yet this year I haven't gotten out any decorations, but then I'm not even keeping my house clean as it is so overwhelming. I barely keep myself clean because it invokes so much fear to take a shower or a bath. Maybe that's ok for Halloween, a dusty musty house and a creepy stinky inhabitant. Not sure my husband would agree 

 

I hope many of you are enjoying the beautiful fall weather and the changing of the leaves on the trees. 

 

Hugs

[downtongirl]

Hey T....so sorry you are in a bad wave.  So much of what you typed I can echo.  This withdrawal does feel like psychological torture and I too want to scream.  As a matter of fact I have been crying a lot recently.  I usually (in the past withdrawal attempts) try to keep a strong front and not let the withdrawal peek through but last week and this week I have done a good bit of crying.  I cried during dinner with my husband this evening.  I joked it felt like it did when I was pregnant and would just cry at the drop of a hat.  Sometimes I feel a little bit better after I cry.  Maybe we will feel better by Christmas right?

[Shep]

 

I'm not sure my psychologist is much help. He keeps telling me that to help with the agoraphobia I should get out and do things. Everything I've read about in reference to agoraphobia in withdrawal is not to do that because it stresses the CNS more which slows the healing. Plus, even when I did manage to get myself out on a daily basis to walk the dog it didn't decreased the amount of fear I experience with this activity in the least. I also go to the hospital for appointments on a weekly basis and the only time my agoraphobia about going is any different is if I'm in a window or my wave has gotten lighter. It's frustrating because I don't think he understands. We talk about it being chemical and not emotional and that's why it doesn't have the same effect to go out and "face my fears" but he still seems to think that's what I should be doing. Since he works with people going through benzo withdrawal you would think he would understand that. I guess part of the problem is that we are all different in the way it affects us. 

 

 

 

Hi, tntd. 

 

I agree with you - I don't think your psychologist is much help, at least not from what you've written. What you've written about involves not venturing out because it stresses the CNS. This is exactly what I've read and what I've experienced. I have to go out 5 days a week because I have to work. The alternative is being homeless, and that would involve being outside 24/7, so I limit my activities to work and going to the grocery store. 

 

Anything can stress the CNS - other drugs, certain supplements, certain foods, as well as certain activities. These cause a "kindling effect" - 

 

Limbic Kindling -- Hardwiring the brain for hypersensitivity

 

I think that symptoms such as agoraphobia are actually the mind and body's way of "helping" us heal. It's kind of like an instruction manual of how to live during withdrawal. 

 

If we follow it carefully, being ever mindful and vigilant of it as it changes course and direction due to nonlinear healing, it will teach us what we need to do. 

 

I'm not saying don't go to a psychologist, but only do so if it helps. We've been trained for many, many years that we need an expert. But sometimes it's the expert that lives deep inside us all that will ultimately guide us out of this dark nightmare. 

 

The "face your fears" mentality of your psychologist is coming from "addiction" medicine, but we are dealing with "dependency".  "Addiction" solely involves a mental process of fear. But "dependency" involves the physiological form where actual parts of the brain - specifically the fear center - is temporarily damaged. Exposing it to repeated stress doesn't do anything but stress this fear center out.

 

I hope you're able to channel your non-drug coping skills into soothing methods that bring you peace during this journey. Perhaps trauma sensitive or restorative yoga may help. Tai Chi is another non-drug coping skill that channels peace to the frazzled CNS. There are many videos on YouTube with beginner's poses to try. 

 

Just some thoughts.

 

Sending healing vibes your way. 

[tntd]

Hi Shep,

 

Thanks for the validation on the psychologist and the need to pay attention to what our mind/body is telling us. I'm sticking with him for now because he specializes in anxiety and trauma and once I get through this I would like to work with someone on the trauma aspect of why I ended up on meds in the first place.

 

At least he listens and believes that I'm in withdrawal he just isn't familiar enough with it to understand it. I'm trying to bring in information to help him learn about it. It would be nice if he took the initiative to look into it but I'm sure he is super busy, it's the VA and they are swamped with people because of the wars, and I know he has a family and young kids. So I do what I can. I think I'm going to print out the portion of Dr Ashton's info on Agoraphobia for him. 

 

I knew about medications causing kindling effects but had not considered activities, foods, and supplements as being able to kindle as well. It makes sense though. I will definitely read the thread you provided the link for.

 

I've been reading your story and I really feel for you. If it weren't for my husband I would be out on the street. I guess I shouldn't say that, one of my parents would probably take me in. It is a scary thought though to be that close to the street. I'm glad you have been able to keep a roof over your head even if it's not the best of circumstances for someone in withdrawal. I complain about the noise from the highway we live close to but it is probably nothing compared to the noises of living in a complex.

 

I really love my meditation, breathing, changing the channel and reading. For some reason I am resistant to yoga, Tai Chi, and Qi Gong. I know they are good for you but I get restless and my mind starts to wander when I am trying to practice them and for some reason I have a harder time re-focusing with them than I do with meditation. I was that way before medication and withdrawal. I think I will try them again but right now I have a hard time doing anything more than walking when it comes to exercise. Treadmills are great My biggest coping skill is distraction. Without it I don't know how I would have survived. 

 

I really appreciate your comments and your suggestions and definitely the healing vibes

 

Hugs and healing to you as well

[Shep]

 

 

I really love my meditation, breathing, changing the channel and reading. For some reason I am resistant to yoga, Tai Chi, and Qi Gong. I know they are good for you but I get restless and my mind starts to wander when I am trying to practice them and for some reason I have a harder time re-focusing with them than I do with meditation. I was that way before medication and withdrawal. I think I will try them again but right now I have a hard time doing anything more than walking when it comes to exercise. Treadmills are great My biggest coping skill is distraction. Without it I don't know how I would have survived. 

 

 

 

 

I think it's great you're able to pick certain non-drug coping skills that are helpful for you. And if walking and meditation are what works, then I wouldn't stress not being able to get into Yoga and Tai Chi right now. 

 

I've gone through phases where certain types of stress relievers work and other times they don't. It's good to have our non-drug coping skills toolbox full of many options. 

 

Have you heard of Dr. Bessel von der Kolk? He wrote this book:

 

The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma

 

It's the best book on trauma I've read so far. Von der Kolk lists many types of therapy for trauma and gives reasons why some forms work better than others. If you get a chance to pick it up from the library or bookstore, it's definitely worth the read.

[tntd]

Hi Shep,

 

Thanks so much for the book recommendation. I will definitely look it up. 

 

It is nice to have a lot of tools in our tool box, especially as our symptoms wax and wane and change.

 

Thank you for your support. 

 

Hugs and healing

 

Just reserved the book at my library

 

Thanks again.

[tntd]

I had a good day yesterday. Woke with very little anxiety. We were having our windows replaced so I figured my anxiety would be really high because strangers would be at my house. Instead I was feeling well enough to joke around with my husband and daughter and then when the workers were here I just stayed in the basement with my dog. 

 

Afterwards my hubby and I checked out all the windows and I was able to enjoy having the windows open.We had to put the window dressings back on and we chatted and worked together doing that. 

 

I am going to make a mermaid blanket, crocheted, for my daughter. I had been trying to find a pattern and with the help of my husband I found one we both really liked. I felt well enough that I was able to go with him to the store to pick up the supplies to make the blanket. It was so nice to get out of the house. I had momentary low level anxiety before we left but I felt fine once we were out of the house. Our daughter was at work so I was able to start working on it. I hope I can finish it in time. 

 

We ended up getting to bed rather late last night and then there were storms all night. I haven't been sleeping the best since I moved my clonazepam doses and the storms kept me awake half the night. I also can't sleep past 8:00am regardless of what time I go to bed. I am so tired today. My anxiety is also super high again. I was hoping yesterday that I was heading into more of a window. Instead today I'm back to crying, trembling, super anxious, and super agoraphobic. I also decided to throw in some feeling low to the mix. My hubby thinks it is mostly due to lack of sleep. I wish I could take a nap. 

 

I've been doing mindfullness meditation with headspace and he suggested staying with the feeling and noting if it comes from a thought or just a feeling and trying to get used to the way it feels and know that it isn't going to hurt me. Well I decided to try that this morning. I noted that the anxiety was a feeling, no thought associated with it, I noted it and tried to experience it and just be with it. Instead of it staying the same or going down it skyrocketed. I abandoned the practice at that point. I think I'll just try to stay in the moment with my mindfullness for the time being. Maybe we just can't work with our chemical emotions in the same way as we can with our biological ones. That has been my experience in trying to use my coping skills with my anxiety in any case. Distraction is the "skill" that works the best. 

 

Not that coping skills don't work at all, I have found that they work in the moment but don't get rid of the symptoms. So when I meditate I am calm in the moment and then when I am not meditating the anxiety returns.

 

I struggle mightly with mindfullness. My "monkey mind" really doesn't want to stay in the moment, but I am practicing it when I remember and hopefully with time it will become more habit and I won't have to remind myself as much. 

 

Hugs and healing to all

[scallywag]

T - It's good to read that you had a good day.

 

I've seen the mermaid blankets and have been thinking about them for my nieces (7 & 9) Have you checked out ravelry [dot] com?  I almost always go there when I'm looking for patterns -- knit or crochet.

[tntd]

Hi Scallywag,

 

Thanks, it was nice to have a good day. I'm sure I will have more eventually

 

I have not checked out ravelry, I will have to give it a look. 

 

I found this one and I like the "scales" look it has so it's the one I have started making. I also learned a really cool new stitch in her video. Foundation double stitch. It's working like a charm. 

 

https://yarnutopia.com/2015/04/29/how-to-crochet-video-tutorial-mermaid-tail-afghan-pattern-3-sizes-small-child-medium-teen-large-adult/

 

Hope you continue to have an uneventful taper. So glad you don't have to give more money to the pharmacuetical companies

 

Hugs

[scallywag]

Hope today goes well for you.  Thanks for the link to the crochet pattern. The video looks helpful -- my crochet ability is very low.

[tntd]

You're welcome. There are lots of begining crochet videos on Youtube. I've gotten pretty good at crocheting over the years but I often learn new tricks when I watch some of these videos. I really enjoy stitching and I can listen to a book on tape when I'm working so extra distraction

 

I managed to make it to the library today to pick up Season nine of Dr. Who. Now we have one week to finish all the episodes and everyone with different schedules!!  

 

My daughter and I also took a short walk downtown and then I was done, the anxiety started creeping in and I just wanted to go home. It was just so gorgeous out I really am glad I could get out and enjoy it even if it was just for a short while. 

 

Hugs and healing

[scallywag]

Hugs and healing back at you!  Good to read that you had a good day and managed getting out and about a bit. One small step for tntd ...

[tntd]

Thanks scallywag

[tntd]

Was able to sleep pretty well last night. Not quality but quantity. I didn't have any nightmares but lots of vivid dreams. Even though I sleep I always feel so exhausted, until the evening and then I wake up. I lay there in bed for about half an hour before I can go to sleep, but at least I am going to sleep. I'm also not waking up and staying awake anymore. 

 

Unfortunately I'm not really experiencing windows anymore either. I'll have a day where I feel a little better but it doesn't last. I was able to get out last time as I posted earlier. I used to get week long windows though and that hasn't happened in over a month and before that one it had been two months. Not sure why they are decreasing instead of getting better. Maybe the benzo tolerance has something to do with it. 

 

My symptoms vary from day to day and sometimes from moment to moment. I'm pretty much housebound. It's almost a relief that it has gotten chilly and I don't have to take my dog for a walk in the morning. I have less anxiety in the mornings because of it. The anxiety surges off and on all day. Not sure what causes it. 

 

Major GI problems today and the headaches that I haven't had in months have come back. They are like whole portions of my head/brain are being stabbed. Like an ice pick headache but over a wider area and they last longer. 

 

So symptoms are waxing and waning and keeping things interesting. The one I hate the most currently is the agoraphobia. Anxiety is a close second. No matter what I do, how often I go to a place the agoraphobia does not abate. The increase in anxiety at the thought of leaving the house is incapacitating in itself. So mostly I just don't go. It isn't worth the stress. If the symptoms go down enough I do enjoy going to the library or someplace quiet, but that also helps me know that this is a withdrawal symptom and not something I will have once I get through all of this. 

 

I start my benzo taper on Nov 1. I'm hoping that it won't take too long to get to a better place since I am going to be doing a slow taper to try to keep the symptoms at a minimum. Moving the benzos around was an eye opener for the withdrawal symptoms. Wellness has been great over on the benzo forum, she's keeping me sane

 

Hugs and healing

[AliG]

tntd.  I had this symptom for so much of my withdrawal. ( agoraphobia). It's pretty much gone.There are some days where it kicks in but on the whole it's within my means to overcome it .

 

It takes some doing, practice and commitment. It's doable though whereas before it was impossible.

 

I still struggle with it as it starts to become a pattern, but slowly I'm coming out of it. I'm sure you will too.

 

I never had this before withdrawal and it's just another symptom to try to conquer .

 

I don't even like to go to the supermarket and sometimes it will take all day before I can get there, but I usually force myself however some days I can't make it .

 

Lucky that I have an understanding husband most of the time.

This can wear thin though and even the most understanding husband / partner can start to question this hell that we go through.

 

You are not alone.

Hugs,

Ali

[tntd]

Hi Ali,

 

Thank you so much for your comments. They give me hope. I have noticed when I have a window that I am able to go out with minimum anxiety. Those are wonderful days. Otherwise it is as you said, impossible and very frustrating. 

 

I'm looking forward to the time when it goes away and I can go out without extreme terror as an appetizer. Right now I only face it for doctor appointments. 

 

I'm so glad you have an understanding husband, I do as well. He has been doing all the shopping for the past four months. He gets really excited if I say I want to go somewhere and he drops whatever he is doing and takes me. I'm not up to going anywhere on my own even in a window. 

 

I can only imagine how hard it is for them to watch us go through this hell. At least we know it will end at some point. 

 

Thank you so much for letting me know I'm not alone because sometimes it really feels that way. I can't tell you how much I appreciate that.

 

Hugs to you as well

[Sheri755]

Hi tntd!

 

I'm on SA a lot these days and was just reading your thread. I'm on my phone in bed so my typing may not be very good.

It looks like we have some similarities in this journey. I also have terror, agoraphobia and the dread of what lies ahead when it comes time to taper clonazepam. BUT, the best thing that we have uncommon are great, supportive husbands who grocery shop and cook for us! ❤ In fact, he's out right now getting some things. He's unwavering and I truly couldn't be more grateful!

 

Distraction seems to help me the most with the high anxiety. Lately I've found relief by having smooth jazz in background while reading threads and have learned a great deal. We have a massager on our bed and that really helps. I think it may also help keep the circulation going as I'm in bed most of the time. I feel safer in the bedroom for some reason.

 

I just wanted to say hi and wish you much healing!! We WILL get there!!

 

Big Hugs,

Sheri

[tntd]

Hi Sheri,

 

Thanks so much for your kind words. I'm sorry you are experiencing this terrible journey too but I'm so glad you have such a wonderful husband. It does my heart good to hear of so many wonderful spouses who are taking care of us while we go through this unexpected experience. 

 

I agree, distraction helps me the most with my anxiety as well. I am currently crocheting a balanket for my daughter and have just requested some books from my library to listen to while I crochet. I can order them online and they download to my kindle so I never have to leave the house to get them I start my taper on Nov 1 and I hope that I will be able to continue to crochet. I'm going really slow in hopes that the withdrawal symptoms will not be bad. I like the idea of music in the background. I like Josh Groban a lot for the soothing tones. Unfortunately too much sound actually bothers me so I don't listen to much music right now. I'm hoping I do ok with the books.  

 

A massager sounds nice. I'm so sorry you are mostly confined to your bedroom but I'm glad you have somewhere you feel safe. 

 

I read a success story about a woman who did a daily micro taper off of clonazepam. She had the agoraphobia and psychological symptoms before she started the taper and then for about 1/3 of her taper. The second third the psychological symptoms disappeared and she had physical symptoms, and the last third she had no symptoms. That is what I hope for. I hope that your tapering goes well too.

 

Hugs and healing to you too. I agree, we will get there, especially with the help of each other, and of course our fabulous husbands

[tntd]

Had a very frustrating conversation with a member of my DBT group. She if of the opinion that I am causing my agoraphobia and anxiety because I am afraid of my upcoming benzo taper. She recently had convinced herself that she had parkinson's disease and when she found out she didn't she decided that my withdrawal symptoms are being caused by the way I'm thinking and by being on this forum just like her symptoms were caused by reading to many sites on symptoms of parkinsons.

 

She feels that the coping skills aren't working because I think they won't. (I only started thinking they won't after they didn't) She feels that I am sabotaging myself with the agoraphobia and that I must be thinking something or something is triggering it and that if I just push myself it will get better. She said yes you're in withdrawal but the skills from CBT, DBT, meditation etc change the brain so that's why they should work even though I'm in withdrawal. She knows that I practice these skills daily even though I'm not getting a lot of help from them currently. I assume at some point they will become effective again so practicing them will help me be easily able to use them when they work again. It was just really frustrating because she has decided that I'm the cause of my withdrawal symptoms. For example since only 20% of people have agoraphobia that means 80% don't and that makes it unlikely that I do except that I thought myself into it. The fact that I didn't even know about any of these symptoms until after I had them and went looking for answers did not seem to phase her.

 

Anyway it raised my own fears that I'm causing all of this myself to come to the forefront of my mind. Also the fear that I won't get better once I'm off the meds. I know these fears are common in withdrawal but I'm in need of a little reassurance after the barrage of negativity and invalidation that I received today. I know she was well meaning but it really hurt. In addition I've been having these one day windows and then long term waves since I switched around my clonazepam and I'm already feeling worn out by the symptoms. This has put me back in tears and doubting myself. Any reasurance would be greatly appreciated. 

 

I'm so grateful to Ali and Sheri for their recent posts as they have helped as I have dealt with this today.