TNTD: Wellbutrin: cold turkey due to debilitating side effect

[tntd]

I haven't been posting much on this thread as I'm currently tapering my benzo. 

 

I did a cut of 2.5% on Jan 12 and immediately went into a non-funcitonal w/d. I seem to be doing better but I know that due to the half life of the medication it could get worse again. I'm hoping it doesn't though. 

 

It is interesting that I started feeling functinonal again yesterday, though I still had a lot of w/d sxs. Every day the sxs seem to change up. Yesterday was the usual anxiety and agoraphobia, still ramped up but not as bad as a couple of days ago, today it is body aches, joint aches, a headache, some tinnitus. I just woke up feeling physically awful on top of the ever present mental sxs. I'm also exhausted, like I didn't get any sleep last night even though I did. I find that so interesting. Why does it cause fatigue even when we have had a "good" night's sleep? 

 

So it seems that 2.5% is too fast and I'm going to have to re-evaluate and try a smaller cut. Bubble was kind enough to give me a link to Rhi's page on "Start small and listen to your body taper plan". It's a wonderful resource and I'm going to take notes and sit down with my husband and pdoc and talk about a plan. I may just have to have my hubby help me make the plan as my cog fog is pretty bad too. 

 

I do believe that the CT from the AD that I was on is complicating my benzo w/d as it severly sensitized my CNS. I'm lucky in that my pdoc also thinks that is what is going on. 

 

I hope that everyone is finding some peace and some healing,

 

Hugs

[tntd]

So I just had a friend tell me that if I meditate using visualization, specific to what I want I.E. to calm the overstimulation in my brain, it will help my brain heal faster. I have read that it is effective in helping to heal physical injuries. What do you think? Also would it even work while we are still on medications or tapering?

 

Thanks for any input.

 

Hugs and healing

[tntd]

I was at my pdoc's yesterday and he agreed to let me do a sxs based taper. I asked him if he has ever had anyone as sensitive to tapering as I am and he told me he has had some people that couldn't get off at all. He also said they don't live very good lives. I don't have a choice. I told him that I tracked my sxs and when I increased my clonazepam by .25mg back in June the relief only lasted two weeks and then I increased it again .25mg and again the relief only lasted for two weeks. At that point I decided I was not going to increase any more because I didn't want to be on a super high dose. He told me that with that history it appears I adapt, or become tolerant to the dosage very quickly and I would have to be on a ridiculous amount over time. He also believes I was in tolerance withdrawal before I started tapering and that makes tapering harder too. I'm looking at a four or five year taper at the least and the idea of being agorpahobic for that long is rather distressing. 

 

 

I have really been struggling with daily anxiety and hypersensitivity causing severe agoraphobia. I have been reading about Lamictal and how it might be able to help with these things in micro doses. However I recently started tapering off my benzo and I don't know how adding lomotrigen to it would affect it, or if it would do anything. I have read the thread and how Altostrata took it and what her recommendations are if a person wants to try it. My concern is that she said it also acts on GABA receptors. I really don't want to mess with my GABA receptors. So now I'm confused and don't know what to do.

 

My doctor was willing to give me a prescription and told me it is fat soluble. He said I could dissolve it and start at .5mg if I wanted to. If anyone knows anything about this or has any thoughts on it I would greatly appreciate it. 

 

Thank you,

 

Hugs and healing

[tntd]

Thought I'd share a funny benzo cog fog story. I hope it makes someone smile, or laugh.

 

You'll never believe what I did last night. It is something I would normally have thought through but it is the type of thing I have been having more trouble thinking through since withdrawal. I make fabric softener out of baking soda, vinegar, and essential oils. I normally make it in a bowl and pour it into the bottle after it has stopped reacting. Well I decided I would make it in the bottle, which probably would have been fine, but I decided to double the recipe. I mixed together portion and everything was find but then I mixed the second portion and decided to "shake" the bottle. Well you can imagine what happened. The plastic bottle started to expand and I didn't want it to explode so I popped the top. I have never seen such a gyser of vinegar and baking soda before. It shot straight up out of the bottle and hit the ceiling. As soon as I popped the top I backed away and just watched as the reaction continued for quite some time. More than half the bottle of baking soda and vinegar was all over my kitchen. I really wish I had had my phone video going at the time because it was really amazing to see. The thin neck made the gyser very precise, so it was thin and tall. It was fantastic to watch. Not as fun to clean up though. My kitchen is super clean now though. It is fortunate for me that I wasn't having a lot of problems with w/d sxs, it was in the evening when I tend to be less anxious, and I had a bit of energy. Jeff was out buying some filtered water, we have nasty water here. So I told him what had happened. His comment was, "Scinece project without me, I am crushed!". I had it mostly cleaned up by the time he got home but he helped with what was left. I made him stop and eat something so he wouldn't get a migraine. When we were finished he went out and got dinner for us while I took a shower. I'm still finding baking soda spots in places. It was an amazing show though. If I decide I want to show them what happened I will take it outside! Of course it won't be quite as impressive without the ceiling and the cabinets causing a shower of their own!! 

 

Hugs and healing

[scallywag]

Funny story -- I'm glad it happened at time when you could see the humour in the situation. Your husband's response was top-notch!

[tntd]

Thanks Scallyway  . I'm glad I was in a good place too. I'm really lucky to have my hubby. He would say he's lucky to have me, so I guess it all works out!! 

 

Hugs and healing

[tntd]

I've had a really horrible day today. I've come to the conclusion that there is no way that the tiny taper I did could have caused this amount of w/d, none of my previous tapers have done this. I believe I'm in a wave from my CT. I'm also having some of the AD w/d sxs I had previously. Cortisol mornings, headaches, and other things that I haven't really had with the benzo taper. I am wondering if the taper has caused the wave or if it's just a wave I would have had anyway. I know there's no way to know. 

 

I think I need to hold my taper for awhile. This wave has been really bad so far. I'm just not sure how long I should hold for. I know a CT from an AD can cause protracted withdrawal syndrome and that makes me unsure of how to proceed. The agoraphobia started with the CT. One of the things I find confusing is that I had such beautiful windows for a few months and then everything got really bad. I'm not sure if that is something that can happen with a CT or not. 

 

Any thoughts or help with this would be greatly appreciated.

 

Hugs and healing

[Altostrata]

Have you taken any other drugs recently? An antibiotic?

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. This can help us figure out if you're having a drug reaction. Could be you are having rebound symptoms from the benzo.

 

It might be a good idea not to taper the benzo for a while, let your nervous system settle down.

[tntd]

I haven't taken any other drugs recently. I only did a really tiny taper of my benzo, .00095mg for three days when this wave hit. My pdoc thinks it's due to stress. My daughter recently started a new job. I have severe agoraphobia and can only leave the house for Dr. apts and she has been my support system. He thinks that since I no longer have her with me most of the time the stress of the change caused a wave. He also told me to hold on the benzo taper. 

 

I have been keeping notes as per your suggestion since June when I CT'd. Is there anything specific I should be looking for?

 

How would I know if I'm having rebound sxs from the benzo. In the past four months I have cut 6% of from my benzo dose. Most of that was a 2.5% cut on January 12th. Since then I have only cut a total of .00665mg over the course of a month. I cut .0019mg two times on Feb 12 & 13 and then .00095mg on Feb 23, 24, & 25th. So in the past month I've cut about a half a percent. With that history is it still possible to be having rebound sxs from the benzo or are you wondering if the benzo itself is causing sxs? 

 

I feel like nine months out from a CT is a long time and I should be getting some relief by now but I also know from reading other people's stories about their CT's that the w/d can go on for a very long time. It's just frustrating with the benzo involved not know what is causing what. 

 

Thank you for all your help. 

 

Hugs

 

T

[tntd]

I don't know if anyone on this side of things will have an opinion on this but I thought I would put it out there. 

 

I was talking with someone on BB and we were discussing glutamate excitotoxicity and what to do if you started having really bad sxs. He suggested updosing a small amount of the benzo could help prevent the sxs from becoming entrenched. Here's the thing, I CT'd off of Wellbutrin nine months ago. I have daily anxiety and agoraphobia that has me housebound. I started struggling with the anxiety as soon as they put me on the Wellbutrin so it may have been causing some CNS damage from the moment I started taking it. After I CT'd I increased my benzo a bit to hopefully help my CNS heal. It seemed to be working. Then I started having interdose w/d and so we moved the benzo around and since then I have not had a window and my anxiety and agoraphobia have only gotten worse.

 

The question is should I updose on the benzo, I have tapered 6% in four months and it has gotten harder the more I have tapered. Would updosing the benzo help to calm my CNS more and help it heal. I would hold for a long while. Then when I start tapering the benzo I can go slowly but I would still be able to taper it without extreme sxs.  I feel like I'm at my wits end but I don't want to make things worse than they already are. 

 

Any thoughts and opinions would be great as I try to figure this out.  

 

Hugs and healing

[scallywag]

Hey TNTD! I've got no knowledge of benzo medications, other than that they exist and are tricky little so-and-sos to discontinue.

[tntd]

Hi Scallywag,

 

LOL, that they are. Shep has given me a wonderful reply on my benzo thread. Unfortunately having had to CT from an AD has really made them even trickier for me  

 

I'll get there eventually. I'm just wondering how long it is going to take to recover from the CT. I may not be able to taper from the benzo until my CNS is a lot more healed. Nine months out, I was hoping I would be more healed than I am currently. It's hard to know what's what though with the benzo involved. The little devils get in there and get everything confused. Scrambled brains anyone? LOL 

 

I'm going to talk with my pdoc about what Shep said and about the answers I've been getting on BB.

 

Hugs and healing to you.

[tntd]

I have a question that I hope someone knows the answer to. 

 

Is it normal to have lots of windows for a few months after a CT from an AD and then just stop having them?

 

I had amazing windows that were getting longer each month and then in September they just stopped. I've had four tiny windows, they didn't last a day just a few hours, since the begining of September. 

 

I'm really starting to get weary and of course the mind starts to wonder if this is just the way things are now. I would appreciate anyones thoughts on this. 

 

Thanks,

 

Hugs and healing,

T

[ChessieCat]

I have found these helpful:

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

From What is Happening in Your Brain

 

Basically- you have a building where the MAJOR streel structures are [...] to be rebuilt at different times - ALL while people are coming and going in the building and attempting to work.

It would be like if the World Trade Center Towers hadn't completely fallen - but had crumbled inside in different places.. Imagine if you were [...] to rebuild the tower - WHILE people were coming and going and [...] to work in the building!  You'd have to set up a temporary elevator - but when you needed to fix part of that area, you'd have to tear down that elevator and set up a temporary elevator somewhere else. And so on. You'd have to build, work around, then tear down, then build again, then work around, then build... ALL while people are coming and going, ALL while the furniture is being replaced, ALL while the walls are getting repainted... ALL while [...] is going on INSIDE the building. No doubt it would be chaotic. That is EXACTLY what is happening with windows and waves.  The windows are where the body has "got it right" for a day or so - but then the building shifts and the brain works on something else - and it's chaos again while another temporary pathway is set up to reroute function until repairs are made. 
And just like the Twin Towers- it's possible - but the buiding is a major effort -and it takes a good year or more sometimes.
(Now look at the new Tower that stands at Ground Zero!  It's taller, [...], and a symbol of freedom.  JUST like you will be!  )

[tntd]

Hi Chessie,

 

Thanks for the reminder of these things. I'm just frustrated that I haven't been having the windows like I used to have and I'm losing hope that I will ever improve. The fact that I'm still on a benzo doesn't help.

 

I always enjoy hearing from you and I hope that you are well,

 

Hugs,

 

T

[tntd]

While you were in that wave did you feel like you didn't know if you would be know how to act if you had a window? I've been struggling with this idea that if I get a window I will be so sensitized I'lll still be agoraphobic and not be able to leave the house anyway. 

 

I have been feeling a lot less anxiety today. I woke up without any in fact. It was really nice. I still had my crazy vivid dreams but some of them were actually funny. The anxiety level has been up and down but mostly on the low side of things. The agoraphobia however has not diminished in the slightest. I had thought that they were related but now I'm wondering if they aren't. The anxiety is it's own w/d symptom and the agoraphobia is related more to my hypersensitivity so that will have to be what goes down for the agoraphobia to go away. I'm so afraid that even when it does that I may have caused myself to have secondary agoraphobia and I won't be able to go out. Can that even happen? Is that happening already. I'm not anxious until I think about leaving the house and then bam my anxiety hits the roof. 

 

I think I'll post this on my main thread as well. I hope someone has an answer to this thought. 

[Mjau]

Hi tntd!

I see you still have a lot of sxs since you CT:d Wellbutrin. And you're in the middle of a benzo-taper. It's tough! Do you feel you're sxs have changed during the last months? I remember you were talking about akathisia? Do you still experience that? 

 

Sending you healing thoughts!

[tntd]

Hi Mjau

 

It's so good to hear from you.  

 

The akathisia was a severe adverse side effect to the AD I was on and was why I had to CT from it so I am fortunate to not experience it anymore.

 

After finding that I really couldn't taper even the smallest amounts of my benzo without horrible w/d sxs I did a bit of research and found that a lot of people who CT end up with really bad sxs for months and sometimes they even get worse for awhile. I decided that adding the benzo taper to that was just fueling the fire of w/d sxs so I am holding on my benzo taper for now. I've been basically holding for about two months and for the first time in about six months I am starting to get some dirty windows. A dirty window is better than no window so I'll take it. I'm going to continue to hold for awhile and see what happens.

 

Thank you for your healing thoughts, I can use all of them I can get.

 

Hugs and healing to you as well  

[Mjau]

Your hugs and healing warm me 

 

Great to hear you're free from akathisia!! It's a horrible condition to have. And really good that you're feeling a small improvement in the form of dirty windows! That's definitely better than no windows at all  And I think it's a good term - "dirty windows". Waves can be of different sizes, from small ripples on the water to big tsunamis. Windows can start with a small patch of light finding it's way in through a window that hasn't been washed for ages to bright shiny crispy clean windows...

 

It's probably wise of you to hold right now. Wait until the windows become clearer, let some more light shine through before you take your next step! Then your body and nervous system will be much more stable when you proceed with the benzo taper. I guess your anxiety might get worse if you taper right now, that's why it might be good to wait until you feel more calm.

 

Hugs! 

[tntd]

Thank you so much for your encouragement Mjau, I really appreciate it.

 

I tried to taper for awhile and not only did the anxiety get worse but I ended up with a lot of additional physical and emotional sxs. I just need a rest. I hope that holding will provide that for me. I'm PMSing right now so the dirty windows have turned back into little waves. I like that analogy too. It makes sense to differentiate the size of the waves as well as the quality of the windows. I'm just not sure how long to hold. My pdoc is hoping that I can hold until I have recovered from my CT and have a couple of weeks, I'm thinking months myself, of feeling normal. He isn't sure how long that will take though. He doesn't care if I taper from the benzo at all though. Of course he's older and won't always be there to be my "dealer"! I don't want to live on benzo's though. Too many issues with them. 

 

All in good time. We will all get there in good time and then we will feel so good because we will know what it is like to feel so bad

 

Hugs and healing to you. I'm glad they warm you  

[Mjau]

Oh PMS can really aggravate the wd sxs. Hang on there, it will soon be better!

 

I know it's difficult to estimate how long to hold. Most importantly I think it is to listen to your body. And I know it's not always easy to know what the body says but one can always try to learn. If you're thinking months then that's probably what you should go for. Maybe your intuition/your gut feeling is telling you that? 

 

Sending you healing thoughts again 

[tntd]

Thanks Mjau,

 

The idea of holding for months is hard in and of intself. The benzo taper is going to take years, just like your taper. It is discouraging at times. If I could get rid of the agoraphobia I think I could deal with the rest so much better. So far the hold hasn't helped any. It's only been a little over a month though. I went back through my sxs checklist looking to see if there was any pattern to my w/d sxs around my cycle. I couldn't find much of a pattern anywhere. Random ups and downs in my sxs. 

 

All in good time I'm sure.

 

Thanks for your healing thoughts.

 

Hugs

[tntd]

Well, after holding for about two months I ended up in a window. So far I am best in the evenings because I'm having severe fatigue in the mornings. Yesterday I felt well enough that I was able to go out to a couple of stores and my husband and I even went out to dinner together. Today, this afternoon we took our dog for a walk. No anxiety and it was my idea to go. Other than the extreme fatigue and some body aches I'm feeling pretty good. I hope this lasts for awhile but even if it doesn't I'm so happy that I've had a bit of a break from the anxiety and agoraphobia. 

[scallywag]

Nice! Little windows in the evenings and outings on Friday and Saturday -- that's worth a celebration!

[tntd]

Thanks Scallywag. I really needed a break, even if it's just a little one. I'm hoping this afternoon will give me the same results as the past two days have. If not I know that I'll get there eventually and hopefully this is the start of getting windows again.

 

Hugs and healing to you.

[tntd]

I had a little over a week of a window. It was very nice and very needed. My anxiety and agoraphobia have increased again but they aren't super bad so I'm still relatively functional. I'm also PMSing so I'm assuming that has something to do with the increased sxs. Every month since I CT'd PMS has been a wild ride. I'm hoping that maybe it won't be as bad this month since I have been holding. 

[tntd]

Well, the PMS wasn't as bad but the day I got my period and since have been awful.

 

I have been very surprised at how bad this wave has been. It's almost like being back at the begining of w/d. The anxiety is all day long with no break in the evening and I'm begining to wonder if the pain is actually a new w/d sx and not a virus as it is lingering in a way that it didn't when I had it previously. I just don't want to blame everything on w/d right away as I know other things happen too.

 

I've been having a lot of crying spells again too along with GI problems. It's like everything has come back just to remind me that I'm not healed yet. I've been doing a lot of crocheting and playing a video game that keeps me distracted but find even these things have not been enough to keep the anxiety at bay. It's so very frustrating after such a beautiful window......and so it goes.

 

I have been able to take my dog outside today despite the agoraphobia and I've distracted myself by doing some weeding and I have been walking the fence line for a little exercise. The fenced part of the yard isn't that big but it's better than nothing and right now it's the only place I can go outside of my house. I tried to do some weight bearing exercises this morning and my heart started palpating and my anxiety went way up so I had to stop. I really miss being able to exercise. Plus I'm putting on weight despite not changing my eating habits.

 

Does anyone know if vivid dreams are from the antidepressant CT or the benzo taper or both. I'm really getting tired of them. At least their intensity varies and sometimes they are very mild but I've had them for ten months now and they really make me feel tired all the time. 

 

Well, I suppose I should stop complaining now. I am grateful that I have a backyard to go to and that today is a beautiful day outside.

 

Hugs and healing Does anyone know if vivid dreams are related to 

[tntd]

I'm still struggling with this wave. I've been using all my coping skills and they help somewhat. Today the day started with anxiety and agoraphobia and the lonliness, feeling down, and crying spells joined the party. Also some GI issues. I just want to get back to baseline so I can be functional. This is icky but I haven't even been able to make myself take a shower. At least I'm brushing my teeth  

 

My poor husband has been working all day and then coming home and making dinner and doing the dishes. Basically taking care of everything. 

 

It's amazing to me that just a little over a week ago I was feeling so good and now I am barely functioning. How quickly things change. I'm hoping that they change again for the better soon. 

[Happy2Heal]

hang on, things will get better again.

 

sorry things are rough now, but they will get better.

 

sending you a cyber hug

[tntd]

Thanks H2H. 

 

Why is it that even though we get windows when we end up back in a wave it sends us back to feeling like it will never end? 

 

I'm grateful for the encouraging words and the threads of others who have made it to the other side. It really gives hope.

 

I had an additional stressor yesterday. In addition to feeling lonely and down I found out last evening that a dear friend of mine passed away at the age of 42. She had a viral infection. To add to that I just got a phone call from my niece that my cousin-in-law's husband is on his way to the hospital with all his organs shutting down. He has cancer. Not a good two days for anyone involved.

 

There was one bright spot and that was the sun shining this morning. 

 

I hope everyone is finding something positive in their day.

 

Hugs and healing

 

Edited March 30, 2022 by ChessieCat
changed member name

[Happy2Heal]

Oh I agree, when a wave hits, it really does seem to knock us off our feet and feels like its' always been bad and that it will always be bad.

I think of the waves like depression now, even if depression is not one of my symptoms. I used to say "that's the depression talking, dont listen to it" any time negative and depressing thoughts popped into my head.

Now I say, that's just the WD talking (during a wave) Ignore it, it's lying, things were better before and they WILL be better again.
Doesn't always work but it's worth a shot

 

 

so sorry to hear about your friend passing away- and so young! also your seriously ill relative, that can't be easy and has to have some effect on your symptoms, too, I imagine.

 

it's great that you are able to appreciate the sun  in the midst of all this turmoil.

((((hugs))))

[tntd]

Thanks so much H2H,

 

Your post brought tears to my eyes. I like what you said. It's just the WD talking, ignore it, it's lying. Things were better before and they WILL be better again. I think I will print that out and post it on my fridge. 

 

Thank you for your condolences too. We are still dealing with our cousin.  A lot of family members are flying in to be with her and her husband. If I didn't have agoraphobia so badly we would probably go too. My father-in-law died almost four years ago now from cancer. My mother-in-law is one of the ones flying in to support her niece. She's the only other person in the family that has been through this so I'm sure she will be a great comfort to our cousin. The waiting is hard and stressful. I have a problem with being to empathetic so I end up crying a lot. Especially right now as I seem to be very emotionally fragile.

 

It's the weekend now and I'm going to enjoy spending time with my husband. 

 

Hug and healing,

 

T

 

Edited March 30, 2022 by ChessieCat
changed member name

[tntd]

Just wanted to drop by my thread and give a quick update. I have been busy with family a lot this past month. My waves have actually been light enough that I've been able to get out and do things. It seems my anxiety is starting to drop away earlier in the day, usually around 2 or 3 in the afternoon. I even woke up to a full window yesterday. That was wonderful. I went to the movies with my husband. I went a couple of weeks ago on our anniversary. I was still feeling anxious but it was a little after three so it had gone down and I really wanted to go. I left way overstimulated and couldn't wait to get home. This time I was in a full window and it was just like going to the movies before withdrawal. We left and I still felt great. I really enjoyed the movie and didn't think of my w/d one time. 

 

On the way home our daughter contacted us and said she wanted to stay at her boyfriends house for dinner. I normally don't invite myself over buy I've met her boyfriends mother and we got along great. She knows all about my w/d and she is really supportive so I thought she might not mind. She actually got really excited that I wanted to leave my house and was thrilled to have us over. We brought strawberry shortcake, gluten free. My husband hadn't met any of the family and I hadn't met his father. We all got along really well. It was wonderful to be out of the house and with people

 

I'm hoping that I will continue to have windows as I am going to start tapering my benzo again starting in July. I will be one year away from my CT on June 1st. I can't believe it's been a year. At times it has seemed like an eternity but right now I can't believe a year has already passed. I'm going to do a tiny sxs based taper. If I can stay in a good place while I taper then I don't care if it takes years. 

 

Wishing windows to everyone.

 

Healing hugs,

T

[scallywag]

What a wonderful update! Thanks for taking time out of a fabulous window to let us know what's going on.

[tntd]

Thanks Scallywag,

 

I hope that you are doing well too. You are definintely an inspiration for going slow and how we can live our lives while tapering if we do.

 

Hugs,

T

[tntd]

I'm still doing pretty well. My anxiety has increased a little but I'm still able to get out of the house and do things. I call it a dirty window, but it's still a window . I can't believe how long it's been going on now. I hope it just keeps getting better. I almost don't want to start my benzo taper again but I know I need to get off of it for so many reasons. 

 

Hope others are finding healing moments.

 

Hugs,

T