tapererer: Possible "kindling" issue

[tapererer]

Hi, I'm not sure where to start...but here's where I am:

 

Following a successful 2 year taper of Abilify, I tried to do the same with Wellbutrin. I had the impression that it would be a much easier taper, so went faster: 4 months. I know I made many mistakes, but am wanting badly to get my life back.

 

To start, I know I went too fast. About a month after I stopped, I fell into depression and anxiety -- nothing like what I had before I started meds. In any case, life got rough and I just wanted things to get back to "normal".  Reinstated 3 weeks later, and unfortunately to my original dose of 300 (at my psychiatrist's recommendation), then down to 225 and am there now.

 

My primary symptom is anxiety, which has been pretty constant. I've been taking no more than 1mg Ativan daily to help.

 

To throw more into the mix, I start TMS treatment last month (April 22), again at my psychiatrist's recommendation.

 

 As I look into things more, I realize I maybe experiencing "kindling" by reinstating too high.

 

I just met with my psychiatrist, handed him a printout of "What I have learnt from helping thousands of people taper off antidepressants and other psychotropic medications" (https://journals.sagepub.com/doi/full/10.1177/2045125321991274), and tried to explain kindling to him. He's generally been supportive of my attempts to taper, but he didn't go along with the idea of "kindling". Instead, he believes that I've relapsed, and that it's coincidental that this occurred while I was tapering the Wellbutrin. He suggest that I go back to adding Abilify, but there's no way I'm going to. 

 

I'm here to ask for a couple of things. First, an idea of what I can expect going forward with my current dose of Wellbutrin, when and if it'll ever "kick in". (I'm scared to my bones that it never will -- and that of course just adds to my anxiety). Secondly, and this might be a fantasy, but are there any psychiatrists who understand these things? (tapering, discontinuation syndrome, kindling, etc).  Cost is not a factor right now -- I just want my life back. If there's anyone in the San Francisco Bay Area (or anywhere via zoom) who could take me through this, I would do just about anything to meet. 

 

Thank you sincerely for any help I can get...

 

--C

[getofflex]

Hello, and welcome to SA.  We are a peer owned and run forum of people who have been or are getting off of psychiatric drugs.  Congratulations on successfully tapering off Abilify!  That is a major accomplishment.  I'm sorry to hear you are having a hard time getting off the Wellbutrin.  

On 5/17/2021 at 5:00 PM, tapererer said:

As I look into things more, I realize I maybe experiencing "kindling" by reinstating too high.

It could be that, or it could also be the fact that you did a fast taper off the Wellbutrin, and lots of dose changes when you were reinstating. Your system may also have been sensitized by getting off of the Abilify.  It could be a combination of all these things.   I will suggest that you stay on your current dose of Wellbutrin for a while to give yourself some stability.  You did a good number of dose changes in the recent months, and this tends to destabilize the nervous system.   It takes a long time for your system to catch its bearings, and for the symptoms to subside.    Read Considerations About Stability Stop Jumping Around

 

Here is some information about how these drugs actually work.  

 

How Psychiatric Drugs Remodel Your Brain

 

This helps you understand what withdrawal syndrome is: 

 

What is Withdrawal Syndrome?

 

Tapering is best done extremely slowly, and we taper by 10% of the current dose, so that the taper becomes exponentially smaller.

 

 Why Taper by 10% of my Dosage  

 

Tips for Tapering Wellbutrin

 

 

Also, as we are recovering, we suggest keeping things slow, simple, and stable. This is extremely important. 

 

Keep it Simple, Slow, and Stable

 

 

When we recover, there are times of feeling OK mixed in with times of feeling bad.  This is called windows and waves.

 

Windows and Waves Pattern of Stabilization

 

Here are some techniques to cope with symptoms: 

 

Non Drug Ways to Cope with Withdrawal Symptoms

 

 

We don't suggest many supplements, but 2 that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you. 

 

Magnesium

 

Omega 3 Fish Oil

 

On 5/17/2021 at 5:00 PM, tapererer said:

Instead, he believes that I've relapsed, and that it's coincidental that this occurred while I was tapering the Wellbutrin. He suggest that I go back to adding Abilify, but there's no way I'm going to. 

Unfortunately, few psychiatrists or doctors really understand these drugs, what they do to people's nervous systems, and how to properly taper off of them.   They assume (key word here being assume) that people's symptoms are just a relapse of their original mental health issues.  I'm glad you are not letting him put you back on Abilify.  Even if you did have a return of your original mental health issues, there are many other ways to address them besides with drugs.    Big drug companies pay literally billions of dollars to convince the medical profession that these drugs are effective and necessary. Psych drugs are a huge cash cow for drug manufacturers.  There is no proof at all that mental health issues are caused by a chemical imbalance in the brain.  Here is more information about that: 

 

Chemical Imbalance is a Myth

 

 

On 5/17/2021 at 5:00 PM, tapererer said:

To throw more into the mix, I start TMS treatment last month (April 22), again at my psychiatrist's recommendation.

Have the TMS treatments helped?  How do you feel afterwards?  Just a word of warning, one member here found them too activating, and they made the symptoms worse.  

Here are links to those posts: 

 

Zenprincess Intro - TMS treatments 1

Zenprincess Intro - TMS treatments 2

 

I've given you quite a bit of information here.  Please read through it, and mull it over, and we will take it from there. In the meantime, take care of yourself, and take heart.  We in this forum have been through this, and we understand first hand the pain and discomfort you are going through.  Please know that the brain is amazing in it's healing abilities.  It takes time, but healing can and will happen. 

Edited May 19, 2021 by getofflex

[Altostrata]

Welcome, @tapererer

 

This is from your signature:

Quote

 

2021-Abilify October 0.13mg

2020-Wellbutrin October 300mg taper down

2021-Abilify May off

2021-Wellbutrin February 12.5mg, 15 February off

 

 

(I think you meant 2020-Abilify October 0.13mg)

 

So, you were down to a low dose of Abilify when you started to reduce Wellbutrin? Did you go off Abilify before or after you went off Wellbutrin?

 

On 5/17/2021 at 3:00 PM, tapererer said:

To start, I know I went too fast. About a month after I stopped, I fell into depression and anxiety -- nothing like what I had before I started meds.

 

Your symptoms started about a month after you went off Wellbutrin, but when did you last take Abilify?

 

What times of day do you take Wellbutrin and Ativan, at what dosages? Are your symptoms better or worse at any particular times of day? How's your sleep?

 

How long have you been taking Ativan? How long have you been taking it daily? Please update your signature with the Ativan information and keep daily notes of when you take your drugs.

[tapererer]

@Altostrata ,@getofflex -- Thank you so much for your replies. I will do my best to answer your questions. I'm still dealing with fairly heavy anxiety, so I may need to take a break from thinking about this before I can finish, but here's a start.

 

On 5/19/2021 at 1:28 PM, getofflex said:

Have the TMS treatments helped?  How do you feel afterwards?

I'm not sure what they've done so far, but I don't notice any change in mood afterwards. The effect is supposed to take some time though. I'm about 2/3 through the treatment, and I might start feeling it in a week or 2, they say.

 

On 5/19/2021 at 5:53 PM, Altostrata said:

(I think you meant 2020-Abilify October 0.13mg)

 

Oh, right...thank you. Corrected.

On 5/19/2021 at 5:53 PM, Altostrata said:

So, you were down to a low dose of Abilify when you started to reduce Wellbutrin? Did you go off Abilify before or after you went off Wellbutrin?

Yes, I was down to .13mg of Abilify, which I considered to be "almost nothing", when I started tapering Wellbutrin. I continued to taper the Abilify though down to .01mg while I tapered the Wellbutrin. Technically, I had stopped from that amount (.01mg) after I had been off then reinstated Wellbutrin. (I've attached a spreadsheet of my Wellbutrin and Abilify tapering schedule if that's of any help.) 

 

I know I made several mistakes here; I should have stopped Abilify completely and waited a bit before starting off the Wellbutrin. I also reinstated the Wellbutrin at too high of a dose. I try not to beat myself up about it as best I can, but that's hard and it increases my anxiety. But I was impatient and didn't really think it through, obviously.

 

On 5/19/2021 at 5:53 PM, Altostrata said:

Your symptoms started about a month after you went off Wellbutrin, but when did you last take Abilify?

My symptoms started about 2 weeks after I went off the Wellbutrin, when I was at .04mg of Abilify. Again, I didn't really think that amount of Abilify would have an effect either way. (FWIW, my psychiatrist feels I've been technically off Abilify for at least a year, since I went below .2mg, but I wouldn't go that far to agree with him). 

 

On 5/19/2021 at 5:53 PM, Altostrata said:

What times of day do you take Wellbutrin and Ativan, at what dosages? Are your symptoms better or worse at any particular times of day? How's your sleep?

I take Wellbutrin XL 150mg at 6am and 75mg  immediate-release at 4:00PM. The Ativan has been kind of "as needed", but almost always In the afternoon, at around 2, but I've been trying to stick to 6 pm. I usually take 1mg once a day. Yesterday, I did .5mg at 6pm because I actually felt better most of the day.

 

My symptoms don't seem to have a rhythm throughout the day, but I'm noticing they change day to day. When it's (anxiety) has been bad, It starts as soon as I wake up and doesn't subside most of the day -- typically until my Ativan. I am able to fall asleep and stay asleep pretty well, though have been waking up around 4am and unable to get back to sleep.

On 5/19/2021 at 5:53 PM, Altostrata said:

How long have you been taking Ativan? How long have you been taking it daily?

I started it daily around March 1. I've had prescribed for maybe 9 years, but almost never took it...maybe .5 mg once every 1 or 2 months when life got a bit intense from time to time.

 

So, some general notes on the past week:

 

From last Friday till this Wednesday, my anxiety had been extreme and let to a couple of panic attacks. It presents as sharp pain in the chest of abdomen, and last for hours. Wednesday was probably the worst. But Thursday I woke up without feeling that anxiety and went through most of the day without it, though with hyper-vigilance for its return. By afternoon, it had come back to a lesser degree, but still felt like a reprieve from the previous days.

 

I'm in individual and couples therapy, and have had 3 individual sessions and 2 couples sessions since last Friday. I also met once with my psychiatrist and will see him again today. So I've been working a lot on reducing my anxiety with their help, and sometime I am able to find relief on my own. My work can be intense, and when I can really focus on a task, I find that the anxiety can sometimes disappear (but will rush back once I'm out of that "zone")

 

This is all to say, we're not all convinced this is med related at this point, that it's possible I'm just freaking myself out about having broken something in my brain and could lose my job, my relationship, etc because of it. The reality is, none of this is at risk -- I have been given great understanding and support by everyone. So, I will work on keeping those thoughts in mind and try not to dwell so much on my current mood and what I may have done to myself. Easier said than done, I know...but not sure what more I can do.

 

This morning I woke with some anxiety, and started to panic a bit. Writing this has settled me down some, and I'm ready to start work. I will keep you posted...

 

Thanks both of you so much for your help...

 

--C

 

 

Abil vs Well.xlsx

[tapererer]

I just had an appointment with my psychiatrist, and it didn't make me feel much better. I don't doubt at all his intention to help me get better; I know he's just using the tools he knows. His recommendations were to add any one of the following to my current Wellbutrin dose:

 

1. Abilify (he believes even 1mg would help)

2. Buspar

3. Lexapro

4. Effexor

 

His thought is that I can start one of these, continue until my current symptoms subside, and then come off of them by micro-tapering as I had done before.

 

He agrees that I should limit and ideally stop the Ativan. Since it's currently my one source of relief, that will be very hard, but I think I will reduce to .5mg daily for now (which I did yesterday), and then stop.

 

I'm so, so hesitant to take more meds, but his promises of relief make it so tempting. He suggested I take a week to think it over. He also suggested that I find a second opinion, which I will do.

 

Of course the fifth option is to stay the course as I have been and just white-knuckle it, which is what I am leaning towards. I just have so many moments with little hope of that working, that I don't even like to think about those days to come.

 

I am just so obviously wrapped up with all of this in my head, and that still could be the main cause of the anxiety itself. It's so difficult to get out of, but I will continue trying.

[Altostrata]

Your psychiatrist doesn't have a clue. You are physiologically dependent on Ativan. Please do not change your dosing at this time.

 

Sorry, I don't download anything. If you want me to look at a spreadsheet, please put it in Google Drive or some other cloud location and post the link.

 

Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

[tapererer]

18 minutes ago, Altostrata said:

Your psychiatrist doesn't have a clue. You are physiologically dependent on Ativan. Please do not change your dosing at this time.

Thanks, just to be clear, I should continue 1mg Ativan at the same time each day? 

[Altostrata]

Yes, and I need to see those daily notes.

[tapererer]

Anxiety scale 1 (mild) to 10 (extreme).
 

5/20 

10:30 pm went to bed

 

5/21

4:30 am woke from uninterrupted sleep (not atypical) with Anxiety of 2

6:00 am Anxiety of 4

Took 150mg Wellbutrin XL

9:00 am Anxiety of 5

12:00 pm Anxiety of 7

TMS Treatment and psych appt.

3:00 Anxiety level 8

4:00 took 75mg Wellbutrin

5:00 Anxiety level 9

6:00 Anxiety level 10/panic attack

Took .75 mg Ativan

6:30 First meal of the day, debrief with partner.

7:00 Anxiety level 3

8:00 Anxiety level 1

 

 

[Altostrata]

15 hours ago, tapererer said:

Took .75 mg Ativan

 

Are you not taking 1mg Ativan? Why did you take 0.75mg yesterday? What time do you regularly take it?

[tapererer]

21 minutes ago, Altostrata said:

Are you not taking 1mg Ativan? Why did you take 0.75mg yesterday? What time do you regularly take it?

Yes, I took .75 yesterday as a reduction per my psychiatrist’s advice, but before I read your comments. I will take 1mg at 6pm going forward.

 

17 hours ago, Altostrata said:

You are physiologically dependent on Ativan. Please do not change your dosing at this time.

To be honest, this has freaked me out since I read it, and I’m not sure what that means for me going forward, and not even sure I want to know. Can you say more about this determination? Do you think this dependence is the cause of my anxiety?

 

Thanks…

[Altostrata]

I need to see more of your daily notes. We may need to balance out your Ativan dosing.

[tapererer]

May 22

 

3:00 am woke then fell asleep
4:00 am woke, anxiety level 
1 5:00 am a short sleep and woke. Anxiety level 1
6:00 am Took Wellbutrin XL 150mg. Anxiety level 2
9:00 am Anxiety level 2.5
12:00 pm Anxiety level 3
2:30 pm Anxiety level 3.5
4:00 Took Wellbutrin 75mg. Anxiety level 4
5:00 Anxiety level 5
6:00 Took Ativan 1mg. Anxiety level 7.5
7:00 Anxiety level 1.5
10:00 pm bedtime. Anxiety level .5
 

[Altostrata]

It appears to me you have interdose withdrawal from Ativan; Wellbutrin may be adding to anxiety, that's a common adverse effect.

 

@Frogie will help you divide your Ativan dose so you're taking doses 12 hours apart. Then you can taper off.

 

Please continue to post daily notes.

[tapererer]

Thank you very much,  @Altostrata, @Frogie. Is there something I can start with this afternoon?

 

 

[Frogie]

Hi:

 

What time do you take your Ativan?

 

You want to cut it in half. Then, for example, if you take it at 8 am, you’ll want to take 1/2 at 8 am, the 1/2 at 9 am. Everyday take the 2nd half an hour later until you get to 8 pm. 
 

Does that make sense?

[tapererer]

@Frogie, thank so much. I take 1mg at 6pm now, so tonight I’ll take .5 at 6 then another .5 at 7. Then tomorrow at 6 and 8, etc. That’s correct?

 

[Altostrata]

1 hour ago, tapererer said:

@Frogie, thank so much. I take 1mg at 6pm now, so tonight I’ll take .5 at 6 then another .5 at 7. Then tomorrow at 6 and 8, etc. That’s correct?

 

 

No, take your usual dose at 6 p.m. tonight. Then take 0.5mg at 8 a.m. tomorrow, and 0.5mg at 7 p.m. The following day, take 0.5mg at 8 a.m. and 0.5mg at 8 p.m.

 

You may feel some bumps because the distribution of the drug in your bloodstream will change. Tomorrow morning, you might feel sedated from the 0.5mg in the morning, but this should even out over a few days.

[tapererer]

@Altostrata, thank you. So, did I misunderstand @Frogie, or is yours a different plan?

 

So you’re saying:

 

Today 5/23

6pm 1mg

 

Tomorrow 5/24

8am .5mg

7pm .5mg

 

5/25 and daily afterwards:

8am .5

8pm .5

 

I will start on that then. Can I ask why this is more recommended over the way I understood frogie’s plan?

 

Thanks again…!

 

[Frogie]

@Altostratais just having you 1/2 your dose and take it almost 12 hours apart the 1st day. I was just having you move it at different times. I think Altostrata's way will be easier after the 1st couple of days and like she said you'll probably have a few bumps for a few days until your body gets used to it but it will settle out very soon. 

[Altostrata]

@Frogie gave a good plan, I clarified it.

 

Fyi, it's better to initially add that dose in the morning and maybe get some sedation than to start with halving the evening dose. Halving the evening dose first may lead to withdrawal symptoms overnight. It's gentler to start with adding the morning dose before halving the evening dose.

[tapererer]

@Frogie, @Altostrata —thank you both so much! I feel lots better now knowing there’s a good explanation for my anxiety attacks, and that there’s a way to end them. I’ll hang in there this week with this in mind and keep the updates coming.

[tapererer]

3 minutes ago, Altostrata said:

It's gentler to start with adding the morning dose before halving the evening dose.

I totally get it — thanks for the clarification!

[tapererer]

5/23

 

3:00 awoke. Restless, unable to return to sleep.

4:00 awake. Anxiety level 1.5

5:00 awake. Anxiety level 2.  Somehow convinced myself it would be a good day, fell until 6.

6:00 am Took Wellbutrin XL 150mg

8:30 got out of bed. Anxiety level 2.

2:00 Anxiety level 3

4:00 Take Wellbutrin 75mg. Anxiety level 4

6:00 Took Ativan 1mg. Anxiety level 6.

8:00 Anxiety level 1

10:00 pm Anxiety level 1

[tapererer]

18 hours ago, Altostrata said:

No, take your usual dose at 6 p.m. tonight. Then take 0.5mg at 8 a.m. tomorrow, and 0.5mg at 7 p.m. The following day, take 0.5mg at 8 a.m. and 0.5mg at 8 p.m.

Unfortunately, I was in the middle of an acupuncture treatment at 8 this morning, but did take Ativan .5mg at 8:30 am instead. Should that change tonight's schedule to 7:30 then? (And then 8:30 pm from tomorrow and going forward?).

 

Thanks,

 

--Chris

[Altostrata]

Yes, you can change the schedule to 7:30 p.m. for today.

[tapererer]

5/24

 

3:00 awoke. Restless, unable to return to sleep.

4:00 awake. Anxiety level 1.5

5:00 am awake. Anxiety level 2.

6:00 am Took Wellbutrin XL 150mg

7:15 am Acupuncture treatment Anxiety Level 3

8:30 am Took Ativan .5mg

10:00 am Anxiety level 2

12:00 pm TMS Treatment Anxiety Level 3. Feeling very “down” however — heavy head.

4:00 pm Took Wellbutrin 75mg. Anxiety level 3.5

Still feeling quite down.

5:00 pm Anxiety Level 3. Still somewhat depressed, though that seems to be decreasing now that work is over.

7:00 pm Anxiety level 2. Feeling much less depressed.

7:30 pm Took Ativan .5mg. Anxiety level 2

8:30 pm Anxiety level 1

10:30 pm bed

 

 

[tapererer]

5/25

 

3:00 am awoke. Restless, unable to return to sleep.

4:00 am awake. Anxiety level 2

5:00 am awake. Anxiety level 2.

6:00 am Took Wellbutrin XL 150m

6:30 am Anxiety level 3

8:00 am Anxiety level 4

8:30 am Took Ativan .5mg Anxiety level 3.5

12:pm TMS Anxiety level 2.5

3:00pm Anxiety level 5

4:00pm Took Wellbutrin 75mg Anxiety level 6

5:00 pm Anxiety level 4 (off work, took a walk)

7:00 pm Anxiety level 6

8:30 pm Took Ativan .5mg

9:30 pm bed. Anxiety level 5

[Altostrata]

Are you taking Wellbutrin XL twice a day? Why the divided dose?

[tapererer]

Morning is 125 XL, afternoon is 75 immediate release. This is what my psych and I settled on after I reinstated back to 300 XL once in the AM, which seemed to cause too much anxiety. I think that just began to work out when the Ativan issue began.

 

Since switching the Ativan to twice daily, the afternoon anxiety has actually improved quite a bit. There have been some real-life stressors that have made this a difficult week for other reasons and upped the anxiety levels. But I think we’re on the right track. I’ll keep posting my daily logs…

 

Thanks so much…!

 

 

[tapererer]

37 minutes ago, tapererer said:

Morning is 125 XL, afternoon is 75 immediate release.

Oops, make that 150 XL…

[tapererer]

5/26

 

3:00 am awoke. Restless, unable to return to sleep.

4:00 am awake. Anxiety level 2

5:00 am awake. Anxiety level 2.

6:00 am Took Wellbutrin XL 150m

6:30 am Anxiety level 3

Taking day off work. Dealing with a real-life personal issue that’s causing more sadness than anxiety.

8:00 am Anxiety level 4

8:30 am Took Ativan .5mg Anxiety level 3.5

12:pm TMS Anxiety level 4

3:00pm Walk in the redwoods Anxiety level 2.5

4:00pm Took Wellbutrin 75mg Anxiety level 3

5:00 pm Anxiety level 3

7:00 pm Anxiety level 4

8:30 pm Took Ativan .5mg Anxiety level 4

10:00 pm bed. Anxiety level 3

[tapererer]

I'm experiencing anxiety now in the morning, though the afternoon levels have reduced. Is this expected? Could this be related to the change in the Ativan dosing schedule still, and I just need to be patient?

 

Thanks...

[Altostrata]

It may take a few days for the Ativan change to fully take effect.

 

It appears you may be getting an increase in anxiety after you take Wellbutrin and before you take Ativan. Surprise, both doses of Wellbutrin may be causing the familiar adverse effect of anxiety. 

 

Suggest you give the Ativan change a week to settle out and see if the increased anxiety after Wellbutrin is still there. If yes, you may want to decrease the morning Wellbutrin dose a bit.

[tapererer]

Thanks...

 

I'm starting to have trouble seeing a pattern of anxiety through the day. For example, I wake up with some anxiety, and that seems to build even before I take my morning Wellbutrin. Also, It doesn't seem like taking the Ativan makes a huge difference; there's some relief, but it's not much.

 

I'm not saying there might not be a cause and effect from the meds, but I wonder how much of this anxiety am I just bringing on myself? At the source of a lot of this anxiety is my fear of not being able to do anything about it, that I'm dependent on Ativan and it will be a long time before I'm off of it, etc. I freak myself out about all of this, and I think that's adding a lot (if not most?) to the anxiety.

 

Does this make sense?  I'm looking for some ways I can think differently about my anxiety. I'm working with a therapist and a psychiatrist (and an acupuncturist), but none can tell me for sure if it's the meds causing the anxiety or if it's me fueling it with my pessimistic thoughts. We're all guessing it's a mix of the two. And I know there's no way to have certainty, but sometime it's amazing how hearing some bit of hopeful information can just cause the anxiety to disappear for a bit until I find something else to worry about. And that makes me think that's it's more my own fears fueling the anxiety than the effects of the meds...

 

Thanks again -- just trying to make sense of things.

 

[tapererer]

5/27

 

3:30 am awoke. Restless, unable to return to sleep.

4:00 am awake. Anxiety level 2

5:00 am awake. Anxiety level 2.

6:00 am Took Wellbutrin XL 150m

7:00 am Anxiety level 4

8:00 am Anxiety level 4

8:30 am Took Ativan .5mg Anxiety level 3.5

9:30 am Anxiety level 3

11:30 Anxiety level 3

12:pm TMS Anxiety level 2.5

1:00pm Anxiety level 2.5

4:00pm Took Wellbutrin 75mg Anxiety level 3

5:00 Anxiety level 3 

(Exerted myself for a couple of hours helping with a move).

7:00 pm Anxiety level 1

8:30 pm Took Ativan .5mg Anxiety level 1

10:00 pm bed. Anxiety level 1