robcbar1: Suffering after 20 years of SSRI

[robcbar1]

I never thought I’d say this, but withdrawing from just 5mg of Lamictal makes my 2+ years of protracted SSRI withdrawal hell seem like a cakewalk.  This is by far the worse I have ever felt in my life.

 

Lamictal has done nothing but exacerbate my protracted WD symptoms and it makes me feel sick every time I take it.  The prescribing doc said it was a mild drug, especially at such a low dose, and I could stop easily with a short taper.  So I originally tried to withdraw under the 10% rule and landed in the hospital with extreme agitation and suicidality.

 

As of today, I’m down to 3.6mg and can only tolerate .2mg drops every week.  After each drop, I experience dizziness, derealization, depression, agitation, cog impairment, and extreme anxiety.

 

I am so desperate that I’ve been calling detox and rehab facilities because I no longer feel safe dealing with this at home.  My naïve hope is that maybe I can go somewhere to withdraw more quickly under medical supervision.  I know a quick detox is foolish but I’m not sure how much longer I can go through this.     

 

I’m very sorry that I ever tried this poison.  For those considering it, please make sure you know what you are getting into.

[Altostrata]

robcbar, how are you doing now? Are you still taking Lamictal?

[robcbar1]

35 minutes ago, Altostrata said:

robcbar, how are you doing now? Are you still taking Lamictal?

Hi Alto!  Yes, still taking lamictal but I’m down to 2 mg from the 5 mg originally prescribed.  Withdrawing from it has been very difficult, I landed in the hospital twice (suicidal thoughts which I’ve never experienced in my life), and then needed to go to a wellness center for eight weeks to recuperate.  For some reason Lamictal really doesn’t sit well with me and I’m terrified to drop my dose again.  I wonder if maybe the extreme withdrawal is due to my already destabilized nervous system.  

 

I’m still struggling every day mainly with derealization, irrational fear, and extreme agitation/irritability.  I manage to sleep more than several months ago which is some improvement.  I am also exercising as much as possible, and trying to eat right.

 

I want nothing more than to post my success story and help others on this site but unfortunately I still have a ways to go.  

[Altostrata]

Why are you continuing to taper Lamictal when you have such severe withdrawal symptoms? If I were you, I'd stop tapering it right now.

 

What time of day do you take it? What is your daily symptom pattern? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

 

[robcbar1]

15 hours ago, Altostrata said:

Why are you continuing to taper Lamictal when you have such severe withdrawal symptoms? If I were you, I'd stop tapering it right now.

 

What time of day do you take it? What is your daily symptom pattern? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right. 

 

I haven’t tapered Lamictal since the end of April.  The plan is to hold at 2.0 mg until I’m strong enough (i.e. minimal symptoms) to drop again.  A drop of even .2 mg or missing my dose by a few hours results in horrific withdrawal symptoms.  I feel like I am setting myself up for another fall, because even if I start to feel better, I’m going to destabilize myself when I eventually taper Lamictal again.      

 

I had a brief window in June where my symptoms subsided a bit, followed by a wave of extreme irritability, anxiety, tinnitus, and irrational fear.  The only thing I have going for me these days is the ability to sleep about 5 hrs./night which is great compared to 1.5 hrs. in late 2017. 

 

I take the Lamictal at 7 am every morning.  Like clockwork, I always seem to feel a little better at night which was the case even before I started taking Lamictal.  I have kept copious notes throughout my journey, especially with Lamictal since I never felt right taking it and withdrawal has been so crippling. 

 

At almost 2.5 yrs. since stopping Lexapro, I’m currently dealing with many well documented symptoms…derealization, sound sensitivity, extreme irritability, anxiety, tinnitus, irrational fear, racing thoughts, and agitation.  I’m sure you hear this from a lot of protracted sufferers but I feel like I’m always going to feel this way and losing hope.    

 

In your opinion, are my symptoms related to SSRI protracted withdrawal, taking the Lamictal, or withdrawal from the Lamictal? 

[Altostrata]

On 1/18/2018 at 1:38 PM, robcbar1 said:

.... In desperation, I agreed to trial lamictal to quell my nervous system and a small dose of remeron to sleep.  The idea of being on meds again scares me but I don’t see another option at this point.  The remeron has allowed me to sleep ~6 hrs/night and eat again (I’ve lost 50 lbs in 2 yrs of WD).  Not sure if the Lamictal is helping at all.  If  anyone has any insight on this  strategy or would just like to provide words of encouragement, I’d really appreciate it.  I’m praying every day that I at least stabilize so I can function.  

 

On 1/29/2018 at 6:39 AM, robcbar1 said:

Quick update to whoever is reading my story (sadly I don't think too many people are)...

 

The Remeron (7.5mg) made everything markedly worse, especially the derealization and tinnitus.  I stopped taking it a week ago and have been sleeping better with 1.25mg of melatonin before bed.  The derealization has toned down a bit but the tinnitus is still quite strong.  I am still taking 5mg of Lamictal although I'm not sure if it doing much of anything.  So what next?  It's very difficult to suffer day in and day out.  I have two young kids and my wife needs me to be a part of the family. 

 

The worst symptoms at this point are derealization, dizziness, tinnitus, shaking/agitation/restlessness (akathesia?), and general feeling of not "being here" or alive.

 

I keep telling myself that this too shall pass.  I am in this for the long haul, but man it's torture.     

 

Any insight would be much appreciated.  I hope everyone is coping and healing.   

 

On 2/13/2018 at 6:56 AM, robcbar1 said:

I’ve been taking Lamictal for 35 days @ 5mg (started at 2.5mg) and can’t figure out if it’s helping.  I don’t know whether it’s a coincidence but my derealization and tinnitus seem worse since starting.  Also, my mood is less stable which is the opposite of what the drug should do, no?  I did however have a good run of sleep and very little anxiety for a few weeks which may have been my nervous system settling down.  I cut my dose to 2.5mg late last week and it set me back big time.  The past three nights have been torture with akathisia, agitation, mood lability, terror, and insomnia.  This is exactly what landed me in the hospital last month so I don’t know what to do.               

 

On 2/14/2018 at 5:24 AM, robcbar1 said:

Thanks Scally - I reduced to 2.5mg for two days last week and had severe rebound anxiety and akathesia.  I've since gone back to the 5mg dose for the past 4 days and praying that I stabilize.  I can't tell if the way I am feeling if part of a deep WD wave or from the Lamictal.  I'm so confused.   

 

On 2/14/2018 at 5:32 AM, robcbar1 said:

Hi Alto - As I mentioned in my last post, I'm not really sure.  My derealization and tinnitus has been worse lately and I just don't feel right.  I cut the Lam dose in half (2.5mg) last week for two days to see if it would help.  Big mistake.  Huge rebound of extreme anxiety which led to akathesia (or something like it).  I've since gone back to the regular dose (5mg) and still feeling awful.  Severe derealization, tinnitus, agitation, anxiety, and low mood.  Since those are all WD symptoms, I've not sure if they are being exacerbated by the Lamictal.  I managed to get a few hours of sleep last night which is a win.    

 

 

 

On 2/15/2018 at 10:53 AM, robcbar1 said:

Alto, from what you know about withdrawal and the nervous system, is it possible that Lamictal could be setting me back in my recovery?  I wouldn’t think so, but I feel terrible right now.  I feel like it may have helped when I started a month ago, but I’m not sure about now.  I don’t know if this is just a bad wave or the Lamictal went paradoxical.  Aside from increased anxiety and agitation, my mood is very low.  It’s getting so bad, my wife may force me to go to the hospital, and I can't handle anymore drugs or setbacks in my progress.  Do you know of any resources in the Northeast that can help me sort this out?  Or even resources out West by you who can provide help via phone (Shipko?).  I am willing to do anything to get better.           

 

On 2/15/2018 at 5:12 PM, Altostrata said:

I speak highly of Dr. Shipko. Did he have recommendations for your treatment?

 

Sorry, I missed your notes in http://survivingantidepressants.org/topic/16285-robcbar1-suffering-after-20-years-of-ssri/?do=findComment&comment=333907

 

It looks to me like the lamotrigine might be causing the derealization, etc. This indicates 5mg might be too much for you in the morning.

 

If it was aggravating the tinnitus, tinnitus would be worse after you take it, not earlier. It looks like your symptoms are reduced when the lamotrigine is partly worn off.

 

Therefore, I deduce a lower dosage of lamotrigine might serve you better. I might take 2.5mg at 7 a.m., move the other 2.5mg a couple of hours later progressively over several days until you're taking it at night.

 

Please keep careful notes as you move the split doses, how your symptoms change (I hope they do) will be very important.

 

 

rob, lamotrigine is a tricky drug. Too much, and you might get adverse reactions. Too little, and it may not help.

 

I believe that 5mg in one dose was too much, and that caused adverse reactions such as derealization, etc. I repeatedly suggested splitting the dose (as above on February 15) and taking it twice a day. This can reduce any bad reactions to lamotrigine while retaining whatever benefit it has.

 

Instead, in February, you reduced your dose by half, to 2.5mg, and initiated waves of uncomfortable symptoms. Since then, further reductions have been difficult.

 

I don't think this dose of lamotrigine is causing your current wave of symptoms. Rather, I think you've reduced the lamotrigine too much and your underlying withdrawal symptoms are coming through.

 

If you had divided your dose in February, we might have gotten more data about what the lamotrigine might have been doing. That's why I said "Please keep careful notes as you move the split doses, how your symptoms change (I hope they do) will be very important."

 

Do you think you could divide the dose now? You would move 1mg an hour later every day until you are taking it 12 hours from your morning dose, maintaining a total daily dose of 2mg.

 

Please keep careful notes as you move the split doses, how your symptoms change (I hope they do) will be very important.

[Eleven10]

Hi RobCar. It made me sad reading your story. I’m 4 years and 8 months into withdrawal. I was on a SSRI for 15 years.

I am as ill now as I was 3.8 years ago. 

Constant tinnitis, severe muscle pain, migraine everyday, chronic fatigue, insomnia and a deep dark depression that not many will understand exists.

I’m sorry for your suffering and hope you can find some peace. We did not deserve to be harmed like this 

[Kozak70]

On 10/16/2017 at 4:29 PM, robcbar1 said:

Please pardon any grammatical issues as I have a hard time sorting my thoughts and typing these days. 

 

My story starts with the death of my father on my 1st day of college in 1995.  I took a few weeks off, and upon returning, experienced tension headaches, loss of appetite, difficulty concentrating,  nervousness, etc.  I was told to see a doctor so I did.  He diagnosed me with an "anxiety disorder" and prescribed an SSRI (Paxil).  I was only 18 and naïve to doctors, so I did what I was told.  The medicine helped me immensely and I thrived for almost 20 years - built a successful career, met my wife, started a family, and maintained healthy relationships.  During that time, I graduated from Paxil to Zoloft and finally to Lexapro. 

 

Life was good...UNTIL a traumatic event with my 2 yr. old son in August 2015 (discovery of a severe tree nut allergy – anaphylaxis/911/ER/etc.).  Shortly thereafter, while still taking Lexapro, my world was turned upside down when I awoke one morning and had my first major panic attack.  Since then, I’ve been suffering from constant severe derealization, anxiety, panic, mood instability, anger, irritability, confusion, and depression.  I fell into this abyss seemingly overnight and I've been there ever since. 

 

I've been highly proactive in seeking treatment including 2 primary care doctors, blood labs, MRI, EEG, 3 psychiatrists, endocrinology, CBT, hospital outpatient program for anxiety, weekly psychotherapy, supplements, acupuncture, reflexology, and medication without any real answers or relief.    

 

With regards to medication, the general consensus was that the Lexapro I was taking for ~13 years pooped out.  After increasing the dose without success, I eventually tapered (probably too quickly) and stopped in Mar 2016.  Then I did a 5 month trial on Zoloft which helped with anxiety but made the derealization 10x worse so I stopped.  I have also trialed several medications since (SSRIs/SNRIs) and needed to stop due to horrible reactions.         

 

I've come to the unfortunate conclusion that I am in a state a protracted SSRI withdrawal.  One of Alto's articles describes me perfectly in terms of a completely dysfunctional nervous system and paradoxical responses to most meds and even some supplements.  The exaggerated alerting only allows me to sleep 3-4 hrs a night and my startle reflex is out of control (a bird chirping will send shivers down my spine).  The most terrifying and unnerving symptom to me is derealization.  It's as if I am in a dream 24/7.  It breaks my heart not being able to truly connect with my wife, kids, family, and friends.  The derealization has created a secondary self-sustaining anxiety/panic loop which compounds my other withdrawal symptoms.  I feel trapped because no medicine seems to help (except for benzos which scare me) and I literally feel like I am dead waiting this out in hopes that I heal.  

 

I'm scared that my long-term use of SSRIs have damaged me in a way that won't heal.  Since I started taking them when I was 18, one could argue that it's all my brain has known.  I'm also disgusted at myself for never questioning what I was putting into my body and the potential long-term impact of these drugs.  Any advice on diet, supplements, homeopathy, MDs, naturopaths, etc. that can help heal would be a God send.  I will go to the ends of the Earth to get some relief.  Thank you for reading my story.

 

thank you for this story ,it remembers mine ,because i m kindled by these drugs too after a long term use too . all my troubles startedwhen i came off prozac 20mg wich  i was on for a decade in 2012 ,i was ok & completely felt healed of my old depression of 1997 ,so i thought that i no longer need this drug & started by skiping days then weeks & i never felt any issues while i did that ,& i was drug free for 10 months & felt fine & happy of my victory then suddenly i started losing weigh without doing anything or walking & practcing exercices  & few days later i started sweating by nights & having nightmarres then insomnia after that i relapsed with a severe depression that came back to me or maye be it was the withdrawals that arrived later because of the verry long half life of fluoxetine (prozac) & ended up by reinstating 20 mg (one capsul of prozac) every day but anxiety was through the roof every days & nights & got serotonin syndrome too then stoped cold turkey for 2 months & got withdrawals then i reinstated prozac but unfortunetelly the drug became my enemy i stayed like that reinstating then adverse reactions then quick tapering then reinstating for six months & went through the neurotoxicity & kindling too after that i have done many reinstatements & cold turkeys upping doses & reducing quickly & never felt ok or stabilized ,i switched to lexapro in 2016 but no feeling beter or stabilization felt then it was the same thing every day just living through protracted withdrawals with millions of worse symptoms in summer 2017  august i started my taper of lexapro by titrating a 10 mg pill in 10ml of water & drunk only 50ml of the solution  wich was 50mg nearly or less & every 15 days i reduced 5% till now i m at 0,45ml but do feel some rare windows & a lot of waves of one week then 5-6 days a window then an other wave of 7-10days comes back its like a roller coaster all that i m verry tired of this living quality wich never i had before my too late reinstatement of 2012,i think about just stopping lexapro as i m on an micro dose now.

 

[robcbar1]

On ‎08‎/‎06‎/‎2018 at 9:58 PM, Altostrata said:

 

 

 

 

 

 

 

rob, lamotrigine is a tricky drug. Too much, and you might get adverse reactions. Too little, and it may not help.

 

I believe that 5mg in one dose was too much, and that caused adverse reactions such as derealization, etc. I repeatedly suggested splitting the dose (as above on February 15) and taking it twice a day. This can reduce any bad reactions to lamotrigine while retaining whatever benefit it has.

 

Instead, in February, you reduced your dose by half, to 2.5mg, and initiated waves of uncomfortable symptoms. Since then, further reductions have been difficult.

 

I don't think this dose of lamotrigine is causing your current wave of symptoms. Rather, I think you've reduced the lamotrigine too much and your underlying withdrawal symptoms are coming through.

 

If you had divided your dose in February, we might have gotten more data about what the lamotrigine might have been doing. That's why I said "Please keep careful notes as you move the split doses, how your symptoms change (I hope they do) will be very important."

 

Do you think you could divide the dose now? You would move 1mg an hour later every day until you are taking it 12 hours from your morning dose, maintaining a total daily dose of 2mg.

 

Please keep careful notes as you move the split doses, how your symptoms change (I hope they do) will be very important. 

Thanks for weighing in Alto.   It really means a lot to me to hear from you.  I was not in the proper mindspace to entertain the notion of dose splitting back in February.  Up to that point, I had never experienced depression or suicidality but at that time I was essentially on suicide watch and needed to “go away for a while” to a holistic wellness center for two months.  Was I experiencing extreme protracted withdrawal symptoms?  Was it the drop in Lamictal or a side effect from taking it?  I’m not sure, all I know is that I never want to feel that way again.  The care I received at the wellness center helped to stabilize me and I had even had a three week window in June when I got home.  I’ve backslid a bit since then and I slog through each day.  I feel trapped on this small dose of Lamictal.  If I miss it even by a couple of hours, I get brutal symptoms.  The idea of tinkering with the dose right now terrifies me.  The plan is to hold steady for a while and see if my WD symptoms subside.  After 2.5 yrs, I have reams of notes but they don’t really vary from day to day.  It’s a very consistent pattern in which mornings are the worst and generally night is a little better.  Some symptoms have subsided a bit while new symptoms have sprung up.  My top three symptoms are currently derealization, irrational fear/anxiety, and irritability.            

[robcbar1]

2 hours ago, Eleven10 said:

Hi RobCar. It made me sad reading your story. I’m 4 years and 8 months into withdrawal. I was on a SSRI for 15 years.

I am as ill now as I was 3.8 years ago. 

Constant tinnitis, severe muscle pain, migraine everyday, chronic fatigue, insomnia and a deep dark depression that not many will understand exists.

I’m sorry for your suffering and hope you can find some peace. We did not deserve to be harmed like this 

Hi Eleven – This is awful news.  Please tell me you’re at least a little better?  I don’t know how we all get through each day but we do.  It speaks volumes to the human spirit.  I wish you peace and healing.  Please message me if you’d like.        

[jonnypeters1234567]

I hope you get some relief soon Rob

 

Best wishes

[robcbar1]

15 minutes ago, jonnypeters1234567 said:

I hope you get some relief soon Rob

 

Best wishes

Thanks Jonny.  It's hard but we're all in this together. The healing of others provides me with hope and strength. 

[jonnypeters1234567]

I have been reading your thread and you mentioned you went to a wellness centre. What did they provide at the centre?

[robcbar1]

9 minutes ago, jonnypeters1234567 said:

I have been reading your thread and you mentioned you went to a wellness centre. What did they provide at the centre?

 

9 minutes ago, jonnypeters1234567 said:

I have been reading your thread and you mentioned you went to a wellness centre. What did they provide at the centre?

Ironically the wellness center I stayed at is geared towards opiate and alcohol rehab but I fit right in.  There were a few guests detoxing off benzos there so they understood my story.  It’s a completely holistic approach with daily meditation, yoga, exercise, group therapy, fresh food, acupuncture, massage, etc.  It was expensive and not covered by insurance but I would have done anything for relief.  The experience was the complete opposite of the 2-week Pavilion program I did at McLean Hospital in January.  $55k not covered and they were clueless on how to handle withdrawal.  Shame on me for not knowing that going into it.   

[Altostrata]

On 8/8/2018 at 6:31 AM, robcbar1 said:

I feel trapped on this small dose of Lamictal.  If I miss it even by a couple of hours, I get brutal symptoms.

 

This indicates to me that a single daily dose of 2mg Lamictal is not enough, it is causing adverse effects at first (because 2mg is too much for you at one time) and wearing off within 24 hours.

 

Strongly suggest you move part of the dose to the evening. How about moving 0.5mg an hour later each day, until you are taking 1.5mg and then 0.5mg 12 hours apart? This might be enough for full lamotrigine coverage.

 

Good to hear you stabilized from too-fast lamotrigine withdrawal at the relaxing wellness center.

 

You may note I have been consistent with my suggestions to split the dose. Not sure what else I can add here.

[robcbar1]

On ‎08‎/‎09‎/‎2018 at 2:31 PM, Altostrata said:

 

This indicates to me that a single daily dose of 2mg Lamictal is not enough, it is causing adverse effects at first (because 2mg is too much for you at one time) and wearing off within 24 hours.

 

Strongly suggest you move part of the dose to the evening. How about moving 0.5mg an hour later each day, until you are taking 1.5mg and then 0.5mg 12 hours apart? This might be enough for full lamotrigine coverage.

 

Good to hear you stabilized from too-fast lamotrigine withdrawal at the relaxing wellness center.

 

You may note I have been consistent with my suggestions to split the dose. Not sure what else I can add here. 

You have been consistent and I appreciate that.  What do you mean by not enough?  I feel worse after taking it, but then again I feel bad in the morning before taking it.  I almost always get slight relief when the sun goes down.  This to me implies that the further I am from my Lamictal dose, the better.  Or maybe it’s just my daily (cortisol/withdrawal) cycle that has nothing to do with Lamictal.           

 

Withdrawal has made me very stubborn because I now operate/reason out of pure fear.  I am terrified to modify my Lamictal dose in any way based on my experience this winter.  Tapering a pediatric dose was 100 times worse than cold turkeying an SSRI after 20 yrs. 

[Altostrata]

2 hours ago, robcbar1 said:

the further I am from my Lamictal dose, the better.

 

Correct, you feel better when the amount of lamotrigine in your bloodstream has declined. This indicates to me that a smaller dose than 2mg at one time would be of more benefit. It seems highly likely to me that if you took a morning dose of 1mg, you would get the benefit without the side effects in the morning.

 

Like many psychiatric drugs, more is not better when it comes to lamotrigine. You can reduce side effects by taking a divided dose.

 

Lamotrigine has a short half-life and is often taken twice a day. To keep the drug at a steady but low level in your bloodstream, I would divide the dose into 1mg in the morning and 1mg in the evening.

 

Now that I've explained this 3 or 4 times over many months of your complaining, could you please try it?

 

 

[Altostrata]

How are you doing, robcbar?

[robcbar1]

3 hours ago, Altostrata said:

How are you doing, robcbar?

Hi Alto - Thanks for checking in on me. Still struggling.  It’s been a painfully slow process, with lots of setbacks, but I think I’m improving ever so slowly.  Gone is the completely illogical fear, but I still struggle mightily with derealization, memory, irritability, and dizziness.   Mornings are the worst, but I almost always feel a little better at night.  Cortisol cycle maybe?  All I can continue to do is hope, stay positive, and use my coping skills.  

[Altostrata]

Yes, that would be hypersensitivity to normal cortisol in the morning. Darkening the bedroom can help.

 

Where are you with lamotrigine? Please update your signature.

[Hibari]

Hi Robcbar1,

 

I wanted to say hi as I too am withdrawing from Lamictal and it has been horrific.  I relate to much of what you have written above.  

 

I am on 9mgs and am now doing split doses.   I too have a paradoxical reaction to taking it.  I get very hyper on the doses I take and the morning dose incapacitates me for whole day.  

 

I am switching to a compounding formula this week and will probably be dosing myself with small amounts 4 times a day including the evening dose.  I also just had an appointment with a new psychiatrist who specializes in antidepressant withdrawal.  She feels my body is fighting the drug at this point.   Hanging out and holding is not serving me . I need to start tapering again according to her.  I won't start the tapering till I switch over and try the compounding formula.  

 

All this to say, that I hear the pain you are in a relate.  I cry every single day from the pain of this withdrawal along with the nausea, sweating, headache and fear.  

 

I so want to get off this medication and I am wishing us both success.  

[robcbar1]

On ‎10‎/‎13‎/‎2018 at 1:35 PM, Altostrata said:

Yes, that would be hypersensitivity to normal cortisol in the morning. Darkening the bedroom can help. 

 

Where are you with lamotrigine? Please update your signature.

Yup.  My bedroom is already a cave.  The bad wakeups went away for a while and then came back with a vengeance.  My waves have been very long and the symptoms wax and wane throughout, but overall I think I’m doing slightly better vs. 8 months ago.  Or maybe I’ve just gotten used to the daily torture?  It’s been over 2.5 years since I stopped Lexapro but then I was guinea-pigged for a year after that so I need to keep the length of my protracted withdrawal in perspective. 

 

My signature is still accurate.  I’m not budging on Lamictal until I am strong enough, hopefully by spring.  The compounding of Lamictal withdrawal on top of my “regular” (SSRI) withdrawal brought me to the gates of hell and I cannot go back there ever again.  After 4 hospital visits and 8 weeks in rehab, my wife and kids need me around through winter until I take another leap.  That drug is the devil in the bottle.          

[Altostrata]

Are you taking 2mg Lamictal? What time of day do you take it? How does it affect you?

 

I see I've asked for your daily symptom pattern many times and not gotten anything. I need to know what kind of symptoms you get after you take Lamictal. "Horrific" is not a symptom. "Nausea" is a symptom.

[robcbar1]

3 hours ago, Altostrata said:

Are you taking 2mg Lamictal? What time of day do you take it? How does it affect you?

 

I see I've asked for your daily symptom pattern many times and not gotten anything. I need to know what kind of symptoms you get after you take Lamictal. "Horrific" is not a symptom. "Nausea" is a symptom. 

Yes, I'm still taking 2 mg Lamictal every morning.  I think I’ve documented my experience many times but then again I cannot remember what I did yesterday, so here goes.  I agreed to trial Lamictal in Jan while at McLean hospital for 2 weeks.  It made my derealization, anxiety (organic fear), mood, tinnitus, and dizziness worse.  So I decided to quickly taper off, thinking it would be easy since I was only on it for a few weeks.  Shame on me.  Withdrawal from Lamictal introduced me to a new symptom set that still terrifies me and my family to this day.  HORRIFIC = Completely irrational suicidality to the point of needing to be monitored 24/7, vomiting multiple times a day, akathisia, extreme irritability, OCD, convulsions (or micro seizures) resulting in 4 trips to the hospital, black outs, inability to put together a complete sentence, memory loss, and odd body pains.  It got so bad I had to go to rehab for 8 weeks because my wife could no longer care for me.  By the grace of God, those symptoms abated by holding steady at 2 mg.  I still struggle every day but at least I am familiar with my current symptoms.  They are less scary and don’t require hospitalization.  As far as patterns, I tried to document them in earlier posts, but whenever I think I have a cycle figured out, something new catches me by surprise.  I completely buy into the cortisol theory which may explain why mornings are so bad and nights are somewhat better.  Focusing too much on my story and my symptoms at this point in my journey seems fruitless.  I don't think the Lamictal itself is making me any worse right now but who knows.  I’m exhausted but buckled in mentally for the long haul and trying to take it one day at a time. 

[Altostrata]

I would like to help you, but frustration is overtaking that desire. I have asked maybe a dozen times for your daily symptom pattern.

 

On 10/12/2018 at 2:44 PM, robcbar1 said:

with derealization, memory, irritability, and dizziness.   Mornings are the worst, but I almost always feel a little better at night.

 

^this is NOT what I'm looking for.

 

What I want to know is exactly what symptoms get worse or better before and after you take a drug, i.e. lamotrigine. Through 4 pages of this topic, I have not been able to get that information. It can be accomplished easily by your using a pen and a scrap of paper to keep daily notes. Time notations, e.g. 2:15 p.m., should appear in these notes.

 

But you know that, and for months you have refused to do it.

 

As I explained much, much earlier, too much lamotrigine can cause very unpleasant adverse effects. This is probably what happened in the hospital. Just the right amount of lamotrigine can be quite beneficial.

 

My guess is much of what you blame on your 2mg lamotrigine is actually post-acute withdrawal syndrome. 2mg is not enough to address it -- but it has enabled you to reach some stability.

 

I'm really not sure how I might help you if you won't give me the information I need.

[Alice1]

4 minutes ago, Altostrata said:

My guess is much of what you blame on your 2mg lamotrigine is actually post-acute withdrawal syndrome

Hi Rob ,  I just wanted to say that I'm 26 months off Lex CTd and I have EXACTLY the same symptoms as you  .. No lamotrigine , no reinstatements , no other drugs . Not even Tylenol .26 months ago I dropped the Lex and have been dry ever since. I would have to agree with Alto on this one . I am very pleased to hear you have settled down a tiny tiny bit ..

[ChessieCat]

46 minutes ago, Altostrata said:

What I want to know is exactly what symptoms get worse or better before and after you take a drug, i.e. lamotrigine. Through 4 pages of this topic, I have not been able to get that information. It can be accomplished easily by your using a pen and a scrap of paper to keep daily notes. Time notations, e.g. 2:15 p.m., should appear in these notes.

 

This is an example of what Alto is requesting:

 

6 a.m. Woke and vomited
8 a.m. Took 2.5mg Lexapro
10 a.m. Had diarrhea
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Stomachache
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Headache got worse
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke with headache

[robcbar1]

On ‎10‎/‎14‎/‎2018 at 8:03 PM, Hibari said:

Hi Robcbar1,

 

I wanted to say hi as I too am withdrawing from Lamictal and it has been horrific.  I relate to much of what you have written above.  

 

I am on 9mgs and am now doing split doses.   I too have a paradoxical reaction to taking it.  I get very hyper on the doses I take and the morning dose incapacitates me for whole day.  

 

I am switching to a compounding formula this week and will probably be dosing myself with small amounts 4 times a day including the evening dose.  I also just had an appointment with a new psychiatrist who specializes in antidepressant withdrawal.  She feels my body is fighting the drug at this point.   Hanging out and holding is not serving me . I need to start tapering again according to her.  I won't start the tapering till I switch over and try the compounding formula.  

 

All this to say, that I hear the pain you are in a relate.  I cry every single day from the pain of this withdrawal along with the nausea, sweating, headache and fear.  

 

I so want to get off this medication and I am wishing us both success.   

Hi Hibari – I’m so sorry that you’re struggling.  How and when you taper is a tough decision. On one hand you want off the drug(s) ASAP, but on the other you’re trying to maintain whatever stability/strength you have, especially if you have a limited support system.

 

Paradoxical reactions seem to be a hallmark of my withdrawal.  I’ve been blessed to have found a doctor who recognizes and understands antidepressant withdrawal and the systematic dysregulation that accompanies it.  Although there’s nothing he can do, it is validating to have medical professional acknowledge the source of my suffering vs. prescribing more drugs.  In a recent conversation as I was complaining about Lamictal and he said something akin to “you cannot tolerate hot, cold, caffeine, alcohol, vitamins, supplements, drugs, or chemicals…and yet you thought Lamictal would be somehow different?...”  and I think he’s spot on in my case.   

 

I hope the compounding formula works for you.  Please stay in touch and I’ll try to help as best as I can.  There are several helpful groups on Facebook that focus specifically on Lamictal withdrawal, SSRI withdrawal, and withdrawal from other drugs that you may find helpful.      

[robcbar1]

12 hours ago, Alice1 said:

Hi Rob ,  I just wanted to say that I'm 26 months off Lex CTd and I have EXACTLY the same symptoms as you  .. No lamotrigine , no reinstatements , no other drugs . Not even Tylenol .26 months ago I dropped the Lex and have been dry ever since. I would have to agree with Alto on this one . I am very pleased to hear you have settled down a tiny tiny bit ..

Hi Alice - Thanks for this note.  I agree with Alto too, she knows her stuff.  How are you doing these days?  Please feel free to message me directly.   

[jonnypeters1234567]

Hi Robb,

 

I good that you are seeing some improvement.

 

What is the SSRI withdrawal group please?

 

Cheers

[robcbar1]

14 hours ago, Altostrata said:

I would like to help you, but frustration is overtaking that desire. I have asked maybe a dozen times for your daily symptom pattern. 

 

 

^this is NOT what I'm looking for.

 

What I want to know is exactly what symptoms get worse or better before and after you take a drug, i.e. lamotrigine. Through 4 pages of this topic, I have not been able to get that information. It can be accomplished easily by your using a pen and a scrap of paper to keep daily notes. Time notations, e.g. 2:15 p.m., should appear in these notes.

 

But you know that, and for months you have refused to do it.

 

As I explained much, much earlier, too much lamotrigine can cause very unpleasant adverse effects. This is probably what happened in the hospital. Just the right amount of lamotrigine can be quite beneficial.

 

My guess is much of what you blame on your 2mg lamotrigine is actually post-acute withdrawal syndrome. 2mg is not enough to address it -- but it has enabled you to reach some stability.

 

I'm really not sure how I might help you if you won't give me the information I need. 

I understand your frustration Alto but implying that I am somehow being coy about sharing my symptom pattern is equally as frustrating.  I won’t rehash all of my symptoms (God knows I’ve done that enough) but they have been present every day to varying degrees since I was CT’d in March 2016.  Everyone is different...I don’t experience specific events throughout the day (i.e. vomited at 10 am or headache after lunch) but rather a continuous set of 4-6 symptoms.  This is why I relate to Pug’s story so well.        

 

I have compiled four journals (almost done with #5) with daily details on how I feel…what I ate, when I ate, how much I slept, whether I tried supplements and at what time, who I interacted with, therapeutic interventions, etc.  Lamictal and withdrawing from it aside, there seems to be two areas that correlate with the intensity of my symptoms:  stress and time of day.  The basic aspects of life in WD create a grossly exaggerated stress response.  Every day is riddled with stressors from my kids, work, finances, relationships, family, marriage, etc.  If the day goes OK, my symptoms are bearable.  If the day brings a lot of stress, my symptoms amplify and even old ones sometimes reappear.  Night usually brings some relief as stressors subside and cortisol is lower.   

 

I agree with your assessment of my current state being post-acute withdrawal vs. a reaction to lamictal which is exactly why I am not tinkering with my dose right now.  I hope it’s beneficial for others.  Unfortunately it wasn’t for me.  I have accepted my place in the chemical sensitivity and paradoxical reaction club, which makes lamictal or any other drug at this point a no-go.   

 

 

[robcbar1]

1 hour ago, jonnypeters1234567 said:

Hi Robb,

 

I good that you are seeing some improvement.

 

What is the SSRI withdrawal group please?

 

Cheers

I have found Positive People Heal Quicker and Psych Med Withdrawal Support Group to be helpful.  Baylissa Frederick also has a book and FB page that helped me on my worst days.  

[Hibari]

2 hours ago, robcbar1 said:

Hi Hibari – I’m so sorry that you’re struggling.  How and when you taper is a tough decision. On one hand you want off the drug(s) ASAP, but on the other you’re trying to maintain whatever stability/strength you have, especially if you have a limited support system.

 

Paradoxical reactions seem to be a hallmark of my withdrawal.  I’ve been blessed to have found a doctor who recognizes and understands antidepressant withdrawal and the systematic dysregulation that accompanies it.  Although there’s nothing he can do, it is validating to have medical professional acknowledge the source of my suffering vs. prescribing more drugs.  In a recent conversation as I was complaining about Lamictal and he said something akin to “you cannot tolerate hot, cold, caffeine, alcohol, vitamins, supplements, drugs, or chemicals…and yet you thought Lamictal would be somehow different?...”  and I think he’s spot on in my case.   

 

I hope the compounding formula works for you.  Please stay in touch and I’ll try to help as best as I can.  There are several helpful groups on Facebook that focus specifically on Lamictal withdrawal, SSRI withdrawal, and withdrawal from other drugs that you may find helpful.      

Thank you robbcar1.  

 

I am on my 3rd day of divided doses and while today I am not feeling well, I understand that it's a combination of getting used to the new formula and wd.   Very frustrating after two days with long windows. 

I too have found a psychiatrist who specializes in antidepressant withdrawal and she is very encouraging of me.  Lots of validation for what I am going through and strong conviction that I will get off this final amount.  I need that kind of encouragement and support.   I like you am super sensitive to all supplments, coffee, alcohol, etc . Even before meds, I could always feel the moment an aspirin hit my nervous system.  I

 

While I have a Facebook account, I have not used FB in a long time.   Would you let me know the name of the Lamictal group and do you know if it's possible to join anonymously? 

 

I offer you my support as well knowing we both are striving to balance our nervous systems.

 

 

[Altostrata]

1 hour ago, robcbar1 said:

rather a continuous set of 4-6 symptoms. 

 

Okay, rob. This is not enough detail for me to visualize what's going on with you. I hope you understand, I won't be responding to your questions any more. Good luck.

[Peachy]

hopefully Rob won't take that message personally. Its hard not to when in the thick of WD. 

[ChessieCat]

2 hours ago, Peachy said:

hopefully Rob won't take that message personally. Its hard not to when in the thick of WD. 

 

Alto (and the mods too) spends a lot of her personal time trying to assist members.  It is very frustrating and time consuming when a member is requested to provide information which can assist the mods to make suggestions.   When a member doesn't provide the information in the format requested, then it makes it very difficult for an assessment of their situation to be made and makes it difficult, in some cases impossible, for the SA team to help them.