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Dave1: Kindled CNS, need help pls

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Dave1

Last August I couldn’t sleep without Xanax. I would wait sometimes until 6/7am to try and avoid the benzo. I quickly realized a problem was occurring becoming reliant on Xanax and instead of working through it, I cold turkey’ed both the maoi I’ve been on for years (Nardil) and the Xanax....biggest mistake of my life. 
 

I suffered for months with a laundry list of crazy side effects, but I was determined to “muscle through it.” Things have only gotten worse. I noticed in the fall I was sensitive to alcohol and 1 drink would throw me off for days. A few weeks ago desperate to feel better, I took Sam-E, a lot of CBD oil, and tablet of Nardil, and quickly flipped into a hypertensive crisis (likely from serotonin syndrome) in the ER with my heartrate at 140. Not good. Things escalated from there; I tried to reinstate on the Xanax occasional use, which only made things worse. Hours after each dose, I seemed to go right back into acute withdrawal; each exposure to the Xanax was more painful and crazy,  including hallucinating, delirium tantrums, severe akisthesia, hypertension and unrelenting panic and anxiety. For days. Multiple ER visits and doctor appointments resulted in more benzos, making everything worse.
 

Realizing my CNS has been kindled (subsequent withdrawals being worse and increasingly dangerous), I have since stopped the Xanax and all supplements.  
 

The acute episodes have subsided and now I’m just very shaken and confused. I’m not really working or functioning at the moment, mostly bedridden. I haven’t slept in weeks (most nights just 1-2 hours max). I feel like my life is in free fall. I seem sensitive to everything; one supplement now throws me completely off. Sugar and gluten are also major triggers. 
 

My game plan for the moment is to give my body a little time to chill. No pills, just food and water. My hope is to try to reinstate on the Nardil at a tiny dose, but I’m petrified it won’t work given how sensitive my system now is. I’ve also thought about gabapentin, given I tolerated it well before. A doctor I saw recommended lamictal. Reinstating on any benzo is clearly off the table given the paradoxical reactions I’ve had. 

 

Should I try a low dose of the Nardil or is my system kindled and now will not tolerate any of it? Should I just try something new like lamictal or gabapentin to calm things down?  
 

I need some freakin’ relief / normalcy. This is insanity. I don’t care about being off meds, I just want my life back and happy to slowly taper from there. I feel desperate.

 

I also am trying to manage all of these big different changes going on in my personal life, it is extremely difficult to do this during withdrawal.

 

I appreciate any ideas and input. Thx you! 

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Dave1

I haven’t slept at all last night. I feel like I’m losing my mind. I tried geodon Thursday night which did help me sleep for a few hours, then rebounded me and made me agitated and have been that way since. I haven’t slept 6 hours straight in a month. I know I just need to give my body and brain some stability, but I can’t stop freaking out about different things in my life that I’ve lost recently because of these meds and my crumbing sanity...my relationship, work is crumbling now, the ability to sleep, friendships, all of it. I’m 32 years old and typically the most vibrant guy in the room, but now falling apart. :(

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Gridley

Welcome to SA, Dave1.  I'm sorry you're going through this.

 

Yes, you've kindled on the benzos and it's good that they're off the table for you.


KINDLING - What is the kindling phenomenon that occurs with benzodiazepines?

 

Regarding trying different drugs, we're a site for going off drugs and as such don't make drug recommendations.  That would be between you and your doctor.

 

What date in 2019 was your last dose of Nardil?  Once I know this we can discuss possible reinstatement. 

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium (glycerinate is a good form) and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems.

 

Here are some sleep tips.

 

Tips to help sleep - so many of us have that awful withdrawal insomnia

 

Relaxation exercises, guided meditations, calming videos, sleep hypnosis

 

Tricks and tips to fall asleep faster

 

http://articles.mercola.com/sites/articles/archive/2017/02/16/tips-tricks-fall-asleep-faster.aspx?utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20170216Z1&et_cid=DM133787&et_rid=1889748952

 

This link contains helpful information, including insomnia and also non-drug coping skills.  

 

Important topics about symptoms, including sleep problems

 

Some members have found Melatonin helpful with insomnia.   

 

Melatonin for sleep   

 

It's best to start at a very low dosage, such as .25mg, and gradually increase if needed to the lowest effective dose.  

 

This is your Introduction topic where you can answer my question, ask your own questions and connect with other members.  We're glad you found your way here.

l
 

 

 

 

 

 

 

 

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Dave1

Hi. Grateful for the response (and all of your responses on other threads I’ve been reading.) 

 

My last dose of Nardil was 8/25/2019 at 45MG. I was thinking 7.5MG (half a tablet), but that may be too much. I am worried about another adverse reaction given CNS hypersensitivity. I am worried I can no longer reinstate and just have to tough this out for many months ahead. Hopefully not. 
 

Thx again. 

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Gridley
7 minutes ago, Dave1 said:

My last dose of Nardil was 8/25/2019 at 45MG. I was thinking 7.5MG (half a tablet), but that may be too much. I am worried about another adverse reaction given CNS hypersensitivity. I am worried I can no longer reinstate and just have to tough this out for many months ahea

 

Reinstatement works most predictably within 3 months of last dose.  However, some people have been successful reinstating farther out than that.  Here's some information on reinstatement.

 

About reinstating and stabilizing to reduce withdrawal symptoms. -- at least the first page of the topic

 

It's a tough call, not so much because you're 5 1/2 months out (though that's a factor) but because your system is so sensitized.  I'd be concerned, as you are, about an adverse reaction and making thins worse.  If you do decide to reinstate, I'd reinstate as low as possible to reduce the likelihood of adverse reaction (or, if there is one, to reduce the severity).  7.5mg would be too high.  I don't know how low you can split the tablet accurately and consistently--into quarters (3.75mg), even eighths?  The lower the better.  Your ability to get a really low dose should be a factor in your decision.

 

I know toughing it out isn't a pleasant thought but it might be the best thing to do.  You'll eventually stabilize and heal.  The thing is, we just can't predict how long it will take.

 

Please let us know what you decide.

 

 

 

 

 

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Dave1

I need to think about it. I’m currently agitated/ activated from the geodon dose Thursday night and haven’t slept in days. I’d be scared to reinstate today, let me try to stabilize first, then try the lowest Nardil dose possible. I really, really want this to work so maybe letting my system calm down first for a week or two (from all the adverse reactions) would be the way to go. 🤔  Thanks again. 

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Dave1

My latest hypothesis after researching is that the reaction that occurred a few weeks back was actually serotonin syndrome, particularly given my symptoms of high BP, agitation, diarrhea, and insomnia. Additional attempts to reintroduce other serotonin boosters, even geodon the other night for sleep, have thrown me right back into SS on each subsequent exposure.
 

This makes me even more nervous to try reinstating. 😬

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Gridley
11 minutes ago, Dave1 said:

 

This makes me even more nervous to try reinstating. 😬

Yes, that's an argument against reinstating.

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Dave1

Another idea is switching to a drug with less or no impact on serotonin. I found this related article here: 

http://www.cnn.com/2010/HEALTH/expert.q.a/06/22/serotonin.syndrome.raison/index.html

 

So I could try to stabilize on Wellbutrin and then slowly taper off that, as an idea. I realize this forum isn’t for new medications, and I will discuss with my DR, but just trying to brainstorm how to safely navigate out of this situation. 

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smketdie

I would suggest against reinstatement or any drug changes for now. Making changes a lot in short period makes it much worse. I tried reinstating but it made me really really bad. Waiting for further Info from moderators is the best call. Welcome

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Dave1

The antihistamine did help a little bit to stop the agitation and restlessness.
 

I’m just trying to calm down. I then woke up super anxious, agitated, and upset. I don’t think additional pills will hell me right now and I just need to stabilize on healthy food and water. 
 

It’s hard not to be in panic/ meltdown mode and stay calm; I am trying. 

I can’t even watch tv to relax, I’m just on my phone all day in bed miserable. Wired but tired. 😕 

 

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PerAsperaAdAstra

And I take it you're not taking any alcohol anymore? Alcohol and benzos don't go along that well and you want your GABA receptors to restore as much as possible. 

 

I hope you will find stability soon. 

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Dave1

No alcohol or supplements, no pills. Trying for just healthy food and water. 

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PerAsperaAdAstra
5 minutes ago, Dave1 said:

No alcohol or supplements, no pills. Trying for just healthy food and water. 

 

That's good news! But I'm really sorry to hear your body is so sensitive to everything now. 

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Gridley
21 hours ago, Dave1 said:

Considering cyproheptadine to help correct the excess seratonin.

 

If you don't want to reinstate the Nardil, my suggestion would be to make no further changes or additions and let your system settle and stabilize from your two cold turkeys without having to contend with more changes.   I sympathize with the desire to seek relief and to do something, but holding and waiting is doing something and sometimes is the best thing to do.

 

 

 

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Dave1

I’m going to try and stabilize now then try a tiny dose of Nardil. I’d like to eat least try. 🤞

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Dave1
21 hours ago, smketdie said:

I would suggest against reinstatement or any drug changes for now. Making changes a lot in short period makes it much worse. I tried reinstating but it made me really really bad. Waiting for further Info from moderators is the best call. Welcome


What happened when you reinstated and how long did it take to recover from that? Thx so much. 

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Gridley
46 minutes ago, Dave1 said:

What happened when you reinstated and how long did it take to recover from that? Thx so much. 

 

Everyone's different but when I reinstated Imipramine, it took around 4 to 5 months for me to stabilize.  Some take a shorter time, some take longer.

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Dave1

I’m so tired of this brutal hell. I would give anything to go back in time 4/5 months and just have reinstated and tapered slowly, and now I’m petrified that window has passed and it will be years before I get my life back. 😞

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LaurafromCT
On 2/16/2020 at 8:58 AM, Dave1 said:

I’m just on my phone all day in bed miserable. Wired but tired. 😕 

 

 

That sucks. I can kind of relate. My brain feels like it's full of bees. Luckily I can sleep. Maybe you could lie down and listen to low volume NPR or an informational video with your eyes closed. Sometimes I do that and I get into a semi sleep state. It engages my brain enough to lull me out of consciousness. 

 

Have you tried benadryl? For sleep or to calm things down?

 

I totally understand wanting to do something or take a pill to get relief. I am debating going on low dose lamictal. I was on Trileptal for a while but I think it made me sick (not sure). Both of those are supposed to be anti kindling.

 

Do you have a good psychiatrist or Dr who believes what is happening to you? What are your current symptoms?

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Dave1
14 minutes ago, LaurafromCT said:

I am debating going on low dose lamictal. I was on Trileptal for a while but I think it made me sick (not sure). Both of those are supposed to be anti kindling.

 

Do you have a good psychiatrist or Dr who believes what is happening to you? What are your current symptoms?

 

What do you mean anti kindling? I am so afraid to try anything that affects serotonin etc. as my system seems on overdrive and sensitive to so much. I def. need and want some relief though, my thought is to try my ex antidepressant. My pdoc did write a lamictal rx so maybe I should try that. 
 

It’s hard for me to relax as I keep hyper focusing on the things wrong in my life and how I feel. I need to practice some acceptance. 
 

When I follow no gluten, no dairy, ancestral diet, that does help, too. 
 

Appreciate your thoughts and response.

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Gridley
6 minutes ago, Dave1 said:

My pdoc did write a lamictal rx so maybe I should try that. 

It is your decision, but my recommendation is to add no further changes to the mix and let your system stabilize and heal.

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beardsagain

I am so sorry you are going through this. I am no expert but I CT'd from fluoxetine and tried to tough it out for 2 years before reinstating at the full dose, albeit with a different generic brand.

 

I felt better almost instantly. At the time I had no idea about this community or protracted withdrawal or kindling.

 

But yeah I felt better pretty quickly. It wasnt like everything went away but I went from operating at 20% to about 60% or 70% on some days.

 

Knowing what I know now I would've reinstated at a low dose and worked my way up from there.

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Dave1

Yeah it’s brutal. Right now my system is agitated and upset from the benzo, alcohol, and other exposures in January. My plan right now is to try and stabilize and then I may try a tiny dose of Nardil, my ex antidepressant. 😐

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Dave1
32 minutes ago, beardsagain said:

I am no expert but I CT'd from fluoxetine and tried to tough it out for 2 years before reinstating at the full dose, albeit with a different generic brand.

Did you also have hypersensitivity during the 2 years or not so much?

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LaurafromCT
1 hour ago, Dave1 said:

 

What do you mean anti kindling?

 

I can't remember whether I read it here or if my Dr said that. My Dr said that Trileptal is like putting flame retardant on a fire. If you do try lamictal start at 1 or 2 mg no more.

 

Have you tried meditation? I use an app called Insight Timer which is free and has lots of positive guided meditations to help with acceptance. 

 

You didn't answer my questions about symptoms throughout the day and whether you have a good Dr.

 

I am sorry you feel bad, it sucks.

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Dave1
22 hours ago, LaurafromCT said:

You didn't answer my questions about symptoms throughout the day and whether you have a good Dr.

 

Right now I only sleep a few hours of highly interrupted sleep a night. I hope this changes very soon. I usually wake up severely depressed and down and that mostly stays like that throughout the day. I try to get out of bed and do things but it’s difficult right now.

 

I’ve shopped around different psychiatrists, and some are better than others. I’m scared to try anything else right now besides magnesium. Once things stabilize a bit I may try a tiny dose of my ex antidepressant.  Thanks for your help and thoughts. 

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Gridley
22 hours ago, LaurafromCT said:

If you do try lamictal start at 1 or 2 mg no more.

Laura, thanks for trying to help but we are a site for going off drugs and do not make recommendations to take additional drugs.  If a member wants to add on new drugs, that is matter between the member and his/her doctor.

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LaurafromCT
3 hours ago, Gridley said:

Laura, thanks for trying to help but we are a site for going off drugs and do not make recommendations to take additional drugs.  If a member wants to add on new drugs, that is matter between the member and his/her doctor.

 

Ok... I was just summarizing what Altostrata had put in her posts about her experience/recommendation using this drug.  I can just refer to her posts going forward.  Or should I not do that?  I absolutely want to adhere to the forum rules but some of us are trapped in a situation where we simply can't get better without reinstating and I thought that was part of the healing process for some people... right?

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Gridley
2 hours ago, LaurafromCT said:

some of us are trapped in a situation where we simply can't get better without reinstating and I thought that was part of the healing process for some people... right?

No problem, thanks for your concern.  Lamictal is tricky and isn't applicable to every situation.  I pretty much let Alto handle it.  Definitely reinstatement of a small dose of the original drug is part of the process and something the mods recommend all the time.  

 

I'm a fellow Imipramine victim, down to 25 from 75mg.

 

Sorry you've been feeling so bad lately

Edited by Gridley

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Dave1

@Gridley / I feel I need to try something soon. I’m so scared what I’ve done to my CNS going cold turkey. I’ve thoroughly read @Altostrata lamictal thoughts on using the drug to stabilize during PWAWs. 
 

At this point, I think I have 3 viable options. 

 

1. Focus on healing and gear up for a long torturous battle.

 

2. Try reinstating 1 or 2MG on Nardil to see if I can calm the waters. I do think this could work. I only have 15MG tablets so I’d have to figure out how to make a liquid or get a jewelers scale. 🤔
 

3. Try 5MG of Lamictal to see if I can decrease agitation/ “alertness” symptoms.

 

Im so keyed up it’s hard to just imagine sitting like this for weeks, months, and years. It’s a constant sense of unease, dysphoria, unable to function, and fight or flight feeling. The hypersensitivity feels escalating and not improving. 
 

Thx for all that you do. 🙏

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Gridley
17 minutes ago, Dave1 said:

 

At this point, I think I have 3 viable options. 

 

1. Focus on healing and gear up for a long torturous battle.

 

2. Try reinstating 1 or 2MG on Nardil to see if I can calm the waters. I do think this could work. I only have 15MG tablets so I’d have to figure out how to make a liquid or get a jewelers scale. 🤔
 

3. Try 5MG of Lamictal to see if I can decrease agitation/ “alertness” symptoms.

 

 

Dave1,

 

Please read the following link re Lamictal and the other link Alto mentions in the link.

Lamictal (lamotrigine) to calm post-acute withdrawal symptom

As Alto says, this requires a doctor who knows what he's doing with Lamictal and then managing to hit the sweet spot of the perfect dose.  She also says, do this at your own risk.

 

Here's what I said earlier about reinstating the Nardil:

 

 

"It's a tough call, not so much because you're 5 1/2 months out (though that's a factor) but because your system is so sensitized.  I'd be concerned, as you are, about an adverse reaction and making things worse.  If you do decide to reinstate, I'd reinstate as low as possible to reduce the likelihood of adverse reaction (or, if there is one, to reduce the severity)."

 

If you do reinstate, I'd definitely get a scale (the AWS Gemini-20, available on Amazon) and reinstate 1mg Nardil.  You'd weigh 10 pills to get an average weight and use that as your baseline of what a 15mg pill weighs.  Then calculate what 1/15 of that weight is. Crush the pill into powder and weigh out 1/15 weight.   That will give you 1mg active ingredient Nardil.

 

 

Edited by Gridley

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Dave1

Okay I ordered the scale and will get it tomorrow. Fingers crossed. I thought about checking myself into a psych ward (I can’t believe I’m even typing this), but believe that would make me even worse, not better. Thanks for your help. 🙏

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Cathy4
2 hours ago, Dave1 said:

tomorrow. Fingers crossed. I thought about checking myself into a psych ward (I can’t believe I’m even typing this), but believe that would make me even worse, not better. Thanks for your help. 🙏

@Dave1,

Hang in there, Dave.  I had some of what you’ve described when I did a too-rapid taper from zoloft at the end of last summer.  I know the feelings you are having.  
 

The thing is, through all of what’s going on, you’re amazingly coherent and clear-headed even though it might not feel that way.  
Hang in there, Dave.  
Cathy

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Giulietta

Hi Dave,

Saying hello and you aren't alone - and not the only one (nor to minimize your misery) - with this grief - and that you'll get through it.  I did a CT of cymbalta/duloxetine mid-2018. Reinstated full dose in Sept 2018. Did what was another CT of same drug in Dec (this was by accident - was supposed to be a slow taper). I have'd a bad time since mid-2018 but I have managed to hang in there. I am in prolonged WD and I'm going to make it. You will too.

 

Without the folks on SA - and knowing that I am not the only one going through this = and the great mods - I would be up a creek without a paddle. 😉

 

I can only speak from my experience - but am here if you need me.

 

G.

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