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Hi all. This post is a last resort. No, I’m not suicidal. But I am on the verge of something — going back on full dose Wellbutrin, a drug that’s been both effective yet awful for me. I’m very desperate to find another solution. I've literally been trying for decades. I’ll explain as concisely and non-boringly as I can. 

I’m 43. I’ve been on 150 SR Wellbutin since I was 19 for depression (possibly mildly bipolar) and ADD. Initially it was a wonder drug — I went from being a C to an A student. I helps me stay productive and keeps me from getting depressed (I’m not happy on it, far from it, but not exactly sad either). But over the years, my side effects have gotten worse: anxiety, fidgety-ness, tinnitus, stuttering, restlessness, paranoia. I hate that everybody knows me as this stressed-out restless person when that’s not who I am. I’m trying to date and it’s tough when I’m so anxious. It's like I could never relax and enjoy myself. I want to believe there’s a better way, that I’m not broken and that with the right combination of food, supplements and exercise my brain will work properly without it. But increasing the dosage turns me totally nuts and lowering it tends to utterly crash my motivation and basic brain functioning. 

I have tried to quit many times. One time I got down to 100 mg for awhile — then I lost my job, so I hopped right back on. I have tried many, many other drugs too. SSRIs — including most recently Brintellix — increase my happiness (yay!) but also turn me into a total couch-snoring zombie (oh no). So those are out. Mood stabilizers like Lamictal have side or ill-effects. ADD drugs like Adderall, Monafidil or even Strattera boost my productivity, but then I crash and feel super angry and send ill-considered emails. Tried Pristiq, Effexor, etc. I once tried a bunch of natural things that bump dopamine (I'm a dopamine seeker), but that didn’t work.

So a year ago, I got really serious about trying to quit Wellbutrin for good. I went to a shrink who specializes in hard cases. He thought some degree of reduction would be beneficial, he said my brain was like an engine that was being driven too fast (I know -- 150 mg isn't that much, but everything hits me hard). But he warned that he’s never seen somebody on a drug this long who successfully fully quit — “your brain starts to need it.” 

We started cutting back very, very slowly — like a mere 10% cutback every couple months. I also ramped up some other things. While I’ve always been relatively healthy, I'm working out four times a week and eating well. I take a bunch of supplements (multi, b-energy, ginkgo, astragalus, vita D, pterostilbene, vita c, CQ10, acetyl l carnation, cod liver oil, coconut oil, green spirilla powder). I drink green and chaga tea. Meditate a few times a week. I’m trying everything I can to give my brain and body what it might need. My labs say everything is at the right level.  

Along the way, I added low-dose Naltrexone, which definitely helped a little (like 1 mg before bed) — it’s used off-label as all-over anti-inflammation drug. That one has stuck. Other exotic ideas my shrink tried, like carbamazepine for a few weeks, and clonidine for another few weeks, did not. 

In a way, what’s happened this year has been a success. I got down to 75 mg in late summer and was still functioning and far less stressed out— I have never come anywhere close to doing that before. But I can’t cut more than 75. Because ever since hitting this level — where I’m still at — I’m also feeling a bit sluggish and low energy and forgetful and sometimes unmotivated. Those are all symptoms, to me, of not quite enough Wellbutrin. Basically, I’ve traded some problems for other problems, and I can't continue to accept these problems because I don't want to endanger my job. 

Here’s the really frustrating part: There are times when I start a new drug, or sometimes when I initially increase my dosage of Wellbutrin, when I’ll feel FANTASTIC. Like utterly fantastic and alive and confident and happy and social and productive and like myself — or at least who I want to be. This happened most keenly when starting the low-dose Naltrexone, and it stuck with me for 3 incredible days …and then, invariably, those feelings will slip away. And that’s a horrible feeling, like the guy in Flowers for Algernon. I’m teased with being in this light, that feeling being whole and mentally healthy is actually possible if only my brain has the right combination … then I slip back down into the clouds again. 

So here I am. A year later, ready to surrender and bump up Wellbutrin back to maybe 100 or 125 and be kinda-okay-but-not-really.  Ultimately I don't care if I'm on a drug or off a drug, I just want to be happy and side-effect free, like everybody else wants on these boards I guess. Maybe it's hopeless. But I've tried so hard -- reading and researching and experimenting over the years. I figured I would post here in case there’s anybody who has any thoughts about my case, anything I should do that I’m not doing. I was planning, after triumphantly beating Wellbutrin, posting something on these boards about how I did it. I wish I could write that post instead. But maybe there’s somebody like me out there who has and knows some clue to solving my decades-long brain puzzle. Thank you for reading. 

Edited by WellbutrinLifer
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Welcome to CB!

6 hours ago, WellbutrinLifer said:

But I can’t cut more than 75.

I understand you want to be on a higher level of Wellbutrin now, but do you think if you stayed at 75 mg for a year, then try to cut back again, it would work?

 

What are all your medications that you are currently taking?

 

6 hours ago, WellbutrinLifer said:

Here’s the really frustrating part: There are times when I start a new drug, or sometimes when I initially increase my dosage of Wellbutrin, when I’ll feel FANTASTIC. Like utterly fantastic and alive and confident and happy and social and productive and like myself — or at least who I want to be. This happened most keenly when starting the low-dose Naltrexone, and it stuck with me for 3 incredible days …and then, invariably, those feelings will slip away. And that’s a horrible feeling, like the guy in Flowers for Algernon. I’m teased with being in this light, that feeling being whole and mentally healthy is actually possible if only my brain has the right combination … then I slip back down into the clouds again. 

This has happened to me too at times.  I think it has to do with it getting in your system ... ie, day 1, it is just right into your system and your body likes it, so your body might react to it better than once it gets more into your system ... almost like it needs more to produce the same effect.  I'm not saying your dose will go up every time you feel low though.  For me, it is just a matter of time before it starts to really work and I see a difference.  You're right ... it is very frustrating.

 

 

 

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When you tried the ADHD drugs (namely Adderall), were you on instant release or extended release? Immediate release drugs are more prone to causing a "crash." Extended release drugs aren't near as prone to this.

Have you had a genetic testing done? It might provide insight into why you react to Wellbutrin this way. It can tell you things like your COMT status (COMT is responsible for breakdown of norepinephrine and dopamine, and it you have a mutation in your COMT gene, then the COMT enzyme is slowed down and you have naturally higher dopamine and norepinephrine), MAOA (monoamine oxidase A, which is responsible for the breakdown of many neurotransmitters, and if you have a mutation in any of many of the MAOA genes, you could have naturally higher levels of neurotransmitters), and many more which involve your methylation cycle, which, with some research, you can learn what supplements to take to accommodate mutations in the methylation cycle.

Another suggestion, if you haven't already tried it, would be to try the SSRI sertraline (Zoloft), because, in addition to being a SSRI, it's also a DRI as well (actually more potent than Wellbutrin). Also, the SMS Viibryd (vilazodone) has some affinity for the DAT (dopamine transporter). Duloxetine (Cymbalta) has weak DRI effects in higher doses, as does venlafaxine ER (Effexor XR), but you've already tried this drug (dopamine reuptake inhibition doesn't really start until 300-375 mg). The tricyclics all have very weak affinity for the DAT, the ones with the highest affinity being clomipramine (Anafranil), desipramine (Norpramin), and protriptyline (Vivactil). The tetracyclic maprotiline (Ludiomil) has decent Protriptyline (Vivactil) is generally regarded as the most stimulating TCA. Desipramine is usually pretty stimulating as well, especially in the higher doses.

Another possibility would be to add an atypical antipsychotic which is a dopamine partial agonist, like aripiprazole (Abilify), Rexulti (brexpiprazole), or Vraylar (cariprazine). 

 

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On 1/28/2017 at 2:26 AM, melissaw72 said:

Welcome to CB!

I understand you want to be on a higher level of Wellbutrin now, but do you think if you stayed at 75 mg for a year, then try to cut back again, it would work?

 

What are all your medications that you are currently taking?

 

This has happened to me too at times.  I think it has to do with it getting in your system ... ie, day 1, it is just right into your system and your body likes it, so your body might react to it better than once it gets more into your system ... almost like it needs more to produce the same effect.  I'm not saying your dose will go up every time you feel low though.  For me, it is just a matter of time before it starts to really work and I see a difference.  You're right ... it is very frustrating.

 

 

 

1

Thank you for your replies. 

On 1/28/2017 at 2:26 AM, melissaw72 said:

Welcome to CB!

I understand you want to be on a higher level of Wellbutrin now, but do you think if you stayed at 75 mg for a year, then try to cut back again, it would work?

 

What are all your medications that you are currently taking?

 

This has happened to me too at times.  I think it has to do with it getting in your system ... ie, day 1, it is just right into your system and your body likes it, so your body might react to it better than once it gets more into your system ... almost like it needs more to produce the same effect.  I'm not saying your dose will go up every time you feel low though.  For me, it is just a matter of time before it starts to really work and I see a difference.  You're right ... it is very frustrating.

 

 

 

 

Quote

Hi thanks for the repllies. 

If I won the Lotto today I'd probably opt to do just what you're suggesting -- stay at 75 mg for a year to try and totally and completely get my brain adapted to the new level. But I need to do something -- either increase the Wellbutrin again or try adding something new -- if only due to my work situation and, frankly, after giving this experiment a whole year I'm pretty frustrated feeling marginal all the time. 

I'm only on the Wellbutrin and ultra-low dose Naltrexone

 

 

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On 1/28/2017 at 6:51 AM, mikrw33 said:

When you tried the ADHD drugs (namely Adderall), were you on instant release or extended release? Immediate release drugs are more prone to causing a "crash." Extended release drugs aren't near as prone to this.

Have you had a genetic testing done? It might provide insight into why you react to Wellbutrin this way. It can tell you things like your COMT status (COMT is responsible for breakdown of norepinephrine and dopamine, and it you have a mutation in your COMT gene, then the COMT enzyme is slowed down and you have naturally higher dopamine and norepinephrine), MAOA (monoamine oxidase A, which is responsible for the breakdown of many neurotransmitters, and if you have a mutation in any of many of the MAOA genes, you could have naturally higher levels of neurotransmitters), and many more which involve your methylation cycle, which, with some research, you can learn what supplements to take to accommodate mutations in the methylation cycle.

Another suggestion, if you haven't already tried it, would be to try the SSRI sertraline (Zoloft), because, in addition to being a SSRI, it's also a DRI as well (actually more potent than Wellbutrin). Also, the SMS Viibryd (vilazodone) has some affinity for the DAT (dopamine transporter). Duloxetine (Cymbalta) has weak DRI effects in higher doses, as does venlafaxine ER (Effexor XR), but you've already tried this drug (dopamine reuptake inhibition doesn't really start until 300-375 mg). The tricyclics all have very weak affinity for the DAT, the ones with the highest affinity being clomipramine (Anafranil), desipramine (Norpramin), and protriptyline (Vivactil). The tetracyclic maprotiline (Ludiomil) has decent Protriptyline (Vivactil) is generally regarded as the most stimulating TCA. Desipramine is usually pretty stimulating as well, especially in the higher doses.

Another possibility would be to add an atypical antipsychotic which is a dopamine partial agonist, like aripiprazole (Abilify), Rexulti (brexpiprazole), or Vraylar (cariprazine). 

 

3

Thanks.  I haven't tried extended release adderall, perhaps that in some very low dose form might be helpful for the productivity issue if not the mood front. 

I have not had genetic testing done. Do consumer ones like 23 and Me test for that or do you need to go to a specialist? I'll look into that.

I've tried Zoloft before. I haven't tried all the SSRIs but after trying like 5 different kinds I'm pretty convinced they alll eventually have the same sleepy impact on me. I did try abilify.  Haven't tried the older tetracyclics

 

 

 

 

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9 hours ago, WellbutrinLifer said:

Thanks.  I haven't tried extended release adderall, perhaps that in some very low dose form might be helpful for the productivity issue if not the mood front. 

I have not had genetic testing done. Do consumer ones like 23 and Me test for that or do you need to go to a specialist? I'll look into that.

I've tried Zoloft before. I haven't tried all the SSRIs but after trying like 5 different kinds I'm pretty convinced they alll eventually have the same sleepy impact on me. I did try abilify.  Haven't tried the older tetracyclics

3

Yeah, if you wanted to start on a low dose of Adderall XR, you could start as low as 5 mg (which would likely not do much) or start at 10-15 mg. 20 mg is closer to the "typical" adult starting dose.

23andme will let you download your raw genetic data for use in 3rd party genetic analysis sites like geneticgenie.org and Livewello just to name a few. Livewello is pretty nice, but you have to pay for it (one time). You have to do quite a lot of your own research, especially on sites like snpedia.com so you know exactly what Livewello and geneticgenie are telling you, and even then it can still be vague. But it's good to know if you have any mutations in your COMT, MAOA, MTHFR, MTRR, MTR, CBS, BHMT, etc. genes. You can get your pdoc to do a genetic test, but in my opinion, you get way more information from 23andme. It cost $200 to get the full genetic test and $100 for the ancestry test which I imagine tests less SNPs.

Yeah if you try a TCA, given that you have an issue with sleepy impacts, (all TCAs may make you sleepy, even the secondary amines which are generally regarded as stimulating) you might want to go with protriptyline which is the most stimulating TCA, or maybe desipramine. Nortriptyline can be stimulatory, but can also be sedating for some.

Otherwise, I'd recommend a newer med like Cymbalta, Viibryd, Trintellix, Pristiq or Fetzima (sorry if you've already tried any of these).

When you tried Abilify, did it have a stimulatory effect on you or no? How did it affect you overall? If you want to try an adjuvant antipsychotic, you could try one similar to Abilify like Rexulti (somewhat more tranquilizing than Abilify), Vraylar (stimulating yet tranquilizing), or try something completely different like Geodon (low doses (20 mg 2x/day) generally more stimulating with higher doses being calming (60-80 mg 2x/day)) or Latuda (also stimulating in low doses (20 mg) and calming, even somewhat sedating in higher doses (≥60 mg for me)).

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2 hours ago, mikrw33 said:

Yeah, if you wanted to start on a low dose of Adderall XR, you could start as low as 5 mg (which would likely not do much) or start at 10-15 mg. 20 mg is closer to the "typical" adult starting dose.

23andme will let you download your raw genetic data for use in 3rd party genetic analysis sites like geneticgenie.org and Livewello just to name a few. Livewello is pretty nice, but you have to pay for it (one time). You have to do quite a lot of your own research, especially on sites like snpedia.com so you know exactly what Livewello and geneticgenie are telling you, and even then it can still be vague. But it's good to know if you have any mutations in your COMT, MAOA, MTHFR, MTRR, MTR, CBS, BHMT, etc. genes. You can get your pdoc to do a genetic test, but in my opinion, you get way more information from 23andme. It cost $200 to get the full genetic test and $100 for the ancestry test which I imagine tests less SNPs.

Yeah if you try a TCA, given that you have an issue with sleepy impacts, (all TCAs may make you sleepy, even the secondary amines which are generally regarded as stimulating) you might want to go with protriptyline which is the most stimulating TCA, or maybe desipramine. Nortriptyline can be stimulatory, but can also be sedating for some.

Otherwise, I'd recommend a newer med like Cymbalta, Viibryd, Trintellix, Pristiq or Fetzima (sorry if you've already tried any of these).

When you tried Abilify, did it have a stimulatory effect on you or no? How did it affect you overall? If you want to try an adjuvant antipsychotic, you could try one similar to Abilify like Rexulti (somewhat more tranquilizing than Abilify), Vraylar (stimulating yet tranquilizing), or try something completely different like Geodon (low doses (20 mg 2x/day) generally more stimulating with higher doses being calming (60-80 mg 2x/day)) or Latuda (also stimulating in low doses (20 mg) and calming, even somewhat sedating in higher doses (≥60 mg for me)).

 

I ordered the full test from 23andMe. Rather not spend the money but...if it gives me one good action-able clue to narrow this stuff down ...figure worth it.. 

Abilify was awhile ago, I honestly don't remember how it impacted me, I should have written down the effects of each along the way.  

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