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composter: Amitriptyline withdrawal & reinstated, unsure of next steps

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composter

Firstly, I am very grateful for this site and support network. I have gone through a hellish experience with withdrawal, and I am grateful that you all can directly relate and provide me with some guidance.

 

I was put on 10 mg Amitriptyline for 3 months for post-concussive headaches and insomnia due to multiple concussions. I tolerated this dose well with some dry mouth at night and grogginess in the morning, which reduced after the first month. (Prior to this I had tried 25 mg Amitrip for 1 day and it was way too high a dose for me; I was bouncing off the walls and had a raging appetite.) After 3 months I decided to taper down, with the approval of my neurologist. But I was not given much guidance at all (he suggested taking the 10 mg every other day which did not work for me). I had some knowledge of antidepressant withdrawal so I knew to take things slowly. I just didn't know how slowly I would need. 

I first tapered to 5 mg (using a pill splitter) for 1 month and then 2.5 mg for several weeks... but promptly began experiencing major withdrawal symptoms. I had 10/10 level headache that sent me to the ER, as well as high levels of fear, panic, and anxiety which are completely abnormal for me. Disturbing and violent thoughts would also come, unbidden. Correlated to this was also diarrhea, rapid heart rate, and trouble urinating. When I was on 5 mg, I also had an episode where my brain felt extremely cold, and since then I have had to wear multiple hats throughout the day and in order to sleep. The cold-head issue has improved and declined as my other symptoms did. (Has anyone seen this issue before?) All this has been much more difficult than the original issues I was having. The drug has caused so many more problems than it supposedly solved.

After connecting this to withdrawal, I went back up to 10 mg on the suggestion of a new neurologist who thankfully understood this as withdrawal and has guided patients with this in the past. Unfortunately I did not read the warnings on this site about reinstating before all this. I have now been back on 10 mg for over 4 weeks. For the first two weeks things were steadily improving each day: I had very vivid, movie-like dreams; the anxiety and fear dissipated; the headaches reduced. 

 

But in the past two weeks, my progress seems to have stalled and somewhat declined. I am again experiencing rapid heart rate and "brain zap" headache as well as digestive issues, but the emotional symptoms are not as pronounced. I don't know if this is a window/wave phenomenon, or a poopout? It either feels like A.) the drug is no longer working for me, B.) my brain is requiring higher levels of the drug, or C.) the brain is adjusting its levels of neurotransmitters.  The new neurologist has suggested either upping the dose to 12.5 mg or switching to Nortriptyline as it is the metabolite of Amitriptyline. I'm not sure what to do at this point.

 

I believe my options are:

1) Stay on 10 mg Amitrip and ride it out to see if this is a window/wave.

3) Increase to 12.5 mg Amitrip to see if things improve.

2) Switch to Nortrip to see if things improve.

 

Should I be worried that I reinstated all the way back to 10 mg? Since I don't wish to lower it at this point, what can I do to feel stabilized?

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ChessieCat

Hi composter and welcome to SA,

 

To get you started please create your drug signature.  This will appear below each of your posts and makes it easy for us to see your drug history at a glance.  Please update it whenever you make a change.  Please make it nice simple by following these instructions (NO diagnoses or symptoms please - thank you):

  • details for last 2 years - dates, ALL drugs, doses
  • summary for older than 2 years - just years and drug/s

Account Settings – Create or Edit a signature

 

If you are taking more than one drug please use the Drug Interactions Checker for all current drugs you are taking and copy and paste the results or a link to them here in your Intro topic.

 

This is your own Introductions topic where you can ask questions about your own situation and journal your progress.

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manymoretodays

Hi Composter,

And welcome aboard.

I'm going to give you some links to familiarize yourself with.  And then you will have them here, all in one place as well.

 

It's feasible that you have developed a dependency(or changes in your CNS-central nervous system function) with the amitriptyline, even with just 5 months of usage.  I think that some of your present symptoms ARE W/D related, from a too fast taper.

Here at Surviving Antidepressants, it is recommended that a person taper by no more than 10% of their current dose with at least a four week hold in-between decreases.  The 10% taper recommendation is a harm reduction approach to going off psychiatric drugs.
   
You might consider an updose of something less than a full 2.5 mg of the amitriptyline.  Perhaps just 1 mg to start, and then stay with it for a good week or more to see if you regain some W/D stability.  The link above does cover a bit about updosing.
 
What is W/D?  More on this in the below links.
 
 

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made.  The CNS likes stability. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.
 
Yes, composter.......I can relate.  No concussions for me........yet just the same........
Best, and Love, peace, healing, and growth,
mmt

 

Edited by manymoretodays

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Altostrata

Welcome, composter.

 

It's possible your current dosage of amitriptyline is not right for you. Going on and off psychiatric drugs can make your nervous system hypersensitive.

 

To determine if it's the drug causing your symptoms, 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.

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manymoretodays

BASIC SUPPLEMENT TOOLKIT

King of supplements: Omega-3 fatty acids (fish oil)

Magnesium, nature's calcium channel blocker

 

Hi again composter,

I just included the links to a couple more topics on supplements that many members have found to be of benefit with W/D symptoms.  It's generally a good idea to start with one or the other of these at a low dose, as so many of us do have some nervous system hypersensitivities.

It's always a great plan to read just the first couple of posts in the links given as well.  Interesting discussions do follow oftentimes after the initial posts too though.......if you like reading.

Take Care.

L, P, H, and growth,

mmt

 

 

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composter

Hi Altostrata and manymoretodays,

 

Thank you both for the welcome and for sharing the resources. I have spent quite some time in the past few days reading through the various commonly-linked posts on this site. I am very grateful for what you all do to help all of us manage withdrawal and learn how to taper more successfully. This is a hugely helpful resource.

 

I think the reinstatement so far has gone quite well, and my system is not hyper-sensitive to the drug, which I am thankful for. I think I am ready to updose just 1 mg because I've now had about 2 weeks of constant headaches. Thanks for the caution to updose slowly.

 

Here is what I'm currently working on:

  • I have kept a detailed symptom log for over a month now. My symptoms are definitely linked to changes in medication. Specifically when I reinstated back to 10 mg that's when things turned around and I started improving, after falling off sharply on 2.5 mg.
  • I will look into the Gemini scale so that I can precisely measure the dose that I'm taking. 
  • I have made several appointments with MDs in my area who are familiar with antidepressant withdrawal/discontinuation syndrome. I am hoping they can serve as knowledgeable guides during this process but will take their rec's with a grain of salt.
  • I will continue to read more about tapering methods (liquid preparations and syringe kits) as well as tapering schedules/spreadsheets so that I can prepare myself to taper once I feel stabilized.

I have several questions for you all:

  1. The more I read into this issue and read other posts on this site, the more I am incensed by how widespread this issue is with little to no support from the medical world. What can we do to lobby or report our concerns? I feel that the least the drug companies could do would be to manufacture much smaller dosages (1 mg tablets) so smaller tapering increments are easier to access.
  2. How do I know when it's right to updose? I don't wish to go higher than 12 or 12.5 mg and really hope to stabilize soon.
  3. How do I know when it's right to start tapering? The neurologist that recognized this as withdrawal told me that I should stay on the drug for at least another 6 months before tapering, and denied that the longer you are on the drug, the harder it is to come off. I would rather be on the drug for only another 3-4 months if I'm stable.
  4. Is there a way I can give you all a small donation to keep this site running? Also, the mods should consider writing a book on all that you have gathered.

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ChessieCat
1 hour ago, composter said:

Is there a way I can give you all a small donation to keep this site running?

 

Please see this post:  donations-gratefully-accepted

 

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composter

@ChessieCat - thank you for the donation link.

 

General update: Earlier this week I was able to coordinate with a local compounding pharmacy for 1 mg Amitriptyline pills so that I can take a steady 11 mg (10 + 1) in order to stabilize. Thank God for compounding pharmacies. The pharmacist I spoke with over the phone seemed to be very knowledgeable about compounding low doses of antidepressants. He produced a capsule of 1 mg drug mixed with cornstarch.

 

I feel like things are close to stabilizing on the 11 mg. I have good energy throughout the day, the headaches are minimal, and my sleep is solid (10 hours a night without waking up). I do continue to experience head symptoms, such as: the sensation of a hole in my head, and a constantly cold head, for which I continue to wear ski hats during the day. I am praying that these head symptoms will subside in the next few weeks.

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Altostrata

Good to hear, composter.

 

As you're stabilizing on 11mg, no need to worry about updosing. You may wish to stay at this level for a couple of months, let your system settle down.

 

As it seems you have access to a good compounding pharmacy, rather than weighing tablet fragments, you may wish to get liquid amitriptyline compounded when you want to taper below 10mg. Tapering is much easier with a liquid.

 

Appreciate your interest in remedying the lack of knowledge in the medical profession about tapering and withdrawal syndrome!

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composter

Thanks for the assurance Alto! Really appreciate all that you and the mods do.

 

The compounding pharmacist did mention that liquid amitriptyline tastes awful, but I agree that liquid would probably be easiest to taper with. I can't imagine it tasting too horrible, and I know it will be worth it in the end.

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composter

Updates:

  • The sensation of the hole in my head has slowly gone away -- I might feel it for 2-3 hours in a day, rather than constantly throughout the day
  • My head is still cold throughout the day but perhaps slightly less so--I only need to wear one hat rather than two.
  • Tachycardia is also improving somewhat--my resting HR is now in the 80s rather than in the 90s or 100s.
  • On the 11 mg I feel the same side effects that I did when I first started the 10 mg back in April. To me these side effects are indicative of start-up side effects, and they are tolerable: I sleep for 10 hrs a night, wake up with dry mouth and slightly groggy, with stiff muscles. It usually subsides 30 min after waking.
     

My plan now is to probably start tapering in Jan 2019, assuming all goes well for the next few months.

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Idlehnds

Sounds like a good plan!   It seems like you are stabilizing now.  I bet you get better and better through the holidays.  :) 

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composter

Thank you for your support @Idlehnds! Good to have buddies on here staying posted.

 

A question for any mods or others with knowledge regarding female hormones/menstrual patterns: I'm still working to stabilizeg on 11 mg Amitriptyline, I've been tracking my symptoms pretty meticulously and I've noticed that I typically experience a dip (more headaches, less physical capacity) for about 1-2 weeks immediately following the conclusion of my period. After that 1-2 weeks things tend to level out again.

 

Is this merely correlated or could there be a causative link between female hormones and withdrawal/stabilization symptoms? I guess I'm just curious on this matter. The dip seems to be less and less pronounced each time, so I'm glad for that. But at this point it's like clockwork and I've come to expect it. I guess it's just an observation I'll keep in mind when I start tapering as well.

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composter

A recent blood test ordered by my PCP showed high cholesterol and high LDL. HDL and triglycerides are within normal range. These results are unexpected and frustrating as I pride myself in a healthy lifestyle, including a plant-strong diet with minimal amounts of processed foods and red meat.

 

I'm in my early 20s, slim, and have no other health problems except for this antidepressant withdrawal/stabilization situation. Could I attribute these elevated levels to the AD? I have simply no other explanation. It's maddening how much these drugs affect such disparate body systems. I'm not planning to go on any other drugs to "control" this, even if my PCP suggests it. But I will follow up with blood tests later on.

 

I found a relevant thread here:

 

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ChessieCat
1 hour ago, composter said:

Could I attribute these elevated levels to the AD?

 

statins-lipitor-and-others

 

I have heard, from someone who has researched statins, that they deplete coenzyme Q10 and that they can cause muscle/heart issues.  He said that when the statins were first produced they included CoQ10 in the prescription to help counteract this.

 

My daughter has Hyperlipidemia Familial Type 2 inherited from her father's side of the family.  Thankfully her doctor has decided on the lowest effective dose and said that there would only be a very small benefit gained by doubling the dose so is sticking to the lowest dose.  I told her about the CoQ10 and did give her some that I had left over.  I told her to research and ask the doctor.  She's 33 so it's not my responsibility to chase after her.

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grandmaD

YIKES!!!  I've NEVER seen anyone on this site have trouble coming off this a/d!!!

 

I was prescribed this a/d for shingles a few months ago and I was so desperate I did try it on two different occasions without success.

 

 The shingles has now which has turned into "post herpatic neuralgia"  and along with several other crisis in my life presently I am tempted to try it again at a lesser dose, but having found your post - the trouble you had after only 3 MONTHS!  That has put the wind up me!  

 

I trust you will stabilise during the next few months, I'm sure you will - and be able to taper properly and successfully.

 

 

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composter

Hi @grandmaD, yes I've heard the same from doctors familiar with antidepressant withdrawal. "You had withdrawal from a tricyclic? I've never heard of that before." It seems that tricyclics are generally considered more benign with less potential for withdrawal. If that's so, a twisted blessing from all this would be that, if I had to go through withdrawal at all, perhaps its best that it was with a relatively "less potent" AD. If I am this sensitive, any other newer AD could have caused even more nightmare-ish effects. I am absolutely sure to never take an AD again after I come off of this successfully. I have made my close family swear the same.

 

Interestingly enough, I found another person who had similar (and maybe even worse) withdrawal from the same dose of Amitriptyline. You can read her thread here: https://www.survivingantidepressants.org/topic/17730-molly19-amitriptyline-withdrawal/

 

That shows me I am not alone and there are probably plenty of others who also have issues with this drug. Thank you for your encouragement. I hope you find ways to manage your ongoing neuralgia without the use of antidepressant drugs. Just curious: Have you tried acupuncture? Or perhaps lifestyle changes like an anti-inflammatory diet? In my personal experience and hearing from others on this site, both can be powerful tools for healing.

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grandmaD

Thanks for the tips.  I have been trying to find out what are anti-inflammatory foods and so far have slippery elm and fenugreek seeds/tea.  I'll see if I can find what other foods are good. 

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composter

Right on, @grandmaD. I'm glad you're interested in learning more about nutritious foods. In general I've learned that foods that cause the most inflammation are dairy and refined foods like sugar, white flour, and some processed meats. An anti-inflammatory diet would generally be one that is low in dairy, refined grains, and sugar but high in fruits, vegetables, nuts, whole grains, and lean meats. I made a lot of very helpful dietary changes while I was in college and, before this AD hell and my post-concussive headaches before that, I enjoyed really good health. I still rarely get colds!

 

Perhaps I can recommend to you this nutritionist's book that can guide you-- Joyous Health: Eat and Live Well Without Dieting. I have no affiliation/connection to her (and none on the Amazon link) but I've thumbed through the book at the bookstore and found it to be very helpful, informative, and gentle in guidance.

 

A general update for my thread:

I'm definitely going through a very different sort of wave in this journey to stabilize on 11 mg. In the past few months, my waves were marked by heightened physical symptoms (headaches, hole-in-head, and limited physical ability) but for the past few days things have shifted and I have more insomnia and more emotional symptoms: crying, irritableness, anger. I'm glad I'm prepared for this somewhat and was reminded of the Rubik's cube analogy in the YouTube video that is often shared on here. We'll see how long this wave lasts and if others to come are similar. I keep a very detailed symptom chart which has been super helpful.

 

Very grateful for the resources I have and for my support system.

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composter

Siiigh. This has been such a rough, distressing week. I think the wave is finally passing and I feel more at peace.

 

For no real reason at all (no triggers I can point to) my brain shifted last Saturday and for every day since I've had the following: extreme insomnia/inability to sleep until 5am, emotional distress with lots of fearfulness and worry, so much weeping and crying for the smallest things.

 

Prior to this I enjoyed several months of emotional stability and regular full sleep and my waves were more physical in nature. Thankfully I was prepared for something like this to happen because of what I've read on here. It's still strange to me that I am going through this while just trying to stabilize on 11 mg. I've made no dosage change since reinstating and updosing by 1 mg.

 

During this time I reached out to friends and close family members to update them that I was in a rough place and hear reassurance and comfort. Prayer has also been very comforting to me. I am finding what I need during an emotional wave is tender loving care from my loved ones, emotional support, and storytelling to keep my mind off what is happening. 

 

I am using the following tools for the insomnia: hot water foot soaks with Epsom salts, lavender essential oil, 0.5 mg melatonin from Trader Joe's, and foot/back rubs from my mom before bed.

 

For the fearfulness and weeping there was not much I could do but just let it happen. It also helped to voice the fears out loud to my parents, to journal, go for walks, listen to soft music, and hear funny stories. I called up quite a few family and friends as well. Shout out to @Idlehnds for providing a lot of reassurance that he's been through this very thing and that it did pass. It has been invaluable to hear from someone going through the same process.

 

Another powerful tool has been nature therapy. I love to garden and spending just ten minutes planting seeds or watering plants outside puts my mind at ease. My mom and I love to visit our local Botanical Garden as well to be surrounded by plants and observe the pollinators. We also go for walks in the neighborhood as urban exploration and have identified fruit trees and enjoyed the various front yard landscapes.

 

My support system has been amazing to me through all of this. It is so comforting to know that I have many loved ones praying for me. For all those reading this I hope and pray there are people in your life who can walk through this with you. I find people are so much more understanding of what you're going through than you might think. 

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grandmaD

Thanks for the foods to eat, as it turns out I pretty much eat all that already and have done so for years and don't eat sugar.  Just recently I had some custard and I only put 1 tab. sugar in it and anxiety at bedtime went high.  So I watch the sugar.

 

I'm  sorry to hear you have to go through this like many others and myself.  I just had a long soak in the bath, it is helpful and relaxing.

 

I hope you stabilise soon, but it is not unusual for it to take some time (perhaps months).  I hope you keep a journal so you know if your symptoms are getting any better.

 

You are doing many things that are good to help yourself.  I found to keep it simple was best.  You are blessed to have the prayer support and family who understand your situation.

 

I found listening to soft, gentle music going to bed is helpful, but it still takes me 2 hours to get to sleep.  I use head phones if I wake in the night to listen to it again.  Many times the anxiety was just so high, I had to get up and I have lost count of how many jig saws I have done in the middle of the night!  They are a good distraction.

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Idlehnds

I am so happy your wave is getting better.  You definitely have such a strong support group that you will get through this in due time.  We all just have to go through the process unfortunately and the quicker we accept it we can let go.  I hope during this time you grow and you uncover beautiful things about yourself.  Jesus always said "The kingdom of heaven is within"... 

  

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Songbird

 

On 11/8/2018 at 11:47 AM, composter said:

Is this merely correlated or could there be a causative link between female hormones and withdrawal/stabilization symptoms? 

 

I believe ADs mess with female hormones.  Many people report problem of this nature.  See:  PMS and menstrual cycle issues during withdrawal

 

On 11/20/2018 at 9:10 AM, composter said:

A recent blood test ordered by my PCP showed high cholesterol and high LDL. HDL and triglycerides are within normal range. These results are unexpected and frustrating as I pride myself in a healthy lifestyle, including a plant-strong diet with minimal amounts of processed foods and red meat.

 

I've found the same thing.  I got high readings, then when retested later, when I had tapered my AD to a lower dose, my tests came back in the normal range.

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composter

Very reassuring to hear this, thank you @Songbird!

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DMV64
On 12/1/2018 at 1:34 PM, composter said:

I think the wave is finally passing and I feel more at peace.

I am glad to read this part...and that you have such a strong support system!

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composter

Thank you DMV, Songbird, Idlehnds, and Grandma!

 

Happy to report that the past three days have been really quite good! Emotionally things are very stable, sleep has been restored to 8-10 hours per night. In fact, I believe some things are even improving ever so slightly, like my cold-head issue and my physical capacity. I'm able to go for longer walks, spend more time out of the house, and I might be able to resume driving soon. It seems like the brain did accomplish some healing during the rough emotional wave last week. So paradoxical how this all works.

 

I read this post today and perhaps it can be encouraging and uplifting to you all: https://beyondmeds.com/2010/08/24/positivesaboutwithdrawal/

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Carmie
On 12/6/2018 at 10:19 AM, composter said:

Thank you DMV, Songbird, Idlehnds, and Grandma!

 

Happy to report that the past three days have been really quite good! Emotionally things are very stable, sleep has been restored to 8-10 hours per night. In fact, I believe some things are even improving ever so slightly, like my cold-head issue and my physical capacity. I'm able to go for longer walks, spend more time out of the house, and I might be able to resume driving soon. It seems like the brain did accomplish some healing during the rough emotional wave last week. So paradoxical how this all works.

 

I read this post today and perhaps it can be encouraging and uplifting to you all: https://beyondmeds.com/2010/08/24/positivesaboutwithdrawal/

 

Hi composter, 

 

Your post made me smile, 

 

I’m glad you are doing well. I’m glad your wave is passing. I’ve mainly been in a wave for over three months but getting lots of windows now. I’m soooo happy for you too. 

 

Sending hugs n sunshine your way🤗☀️

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Dejavu

Composter, how are you doing today? 

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composter

Thanks for the sunshine @Carmie! You must be having a lot of it down under these days :) So glad you are experiencing more windows--hold onto that!

 

Thanks for checking in @Dejavu. Things continue to be quite good with me, actually. I have felt very strong in the past five days. So much so, that I would say I'm feeling almost as strong and capable as I did back in June of this year when I started my unsuccessful taper. It's taken three months for the 10-12 different physical and emotional symptoms that appeared during withdrawal to lessen and subside (not without ups and downs along the way).

 

I really hope that I'm on a smooth path to feeling stabilized. We'll see if I go through any other emotional waves over the next few months, but if not then I should be ready for my taper very soon. Will be going on a short road trip with my family over the next few days. Here's to doing things I never thought I'd be able to do when I was in the throes of withdrawal! The nervous system and brain are truly complex and mysterious, and truly there are innate mechanisms that, with time, bring eventual healing.

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Dejavu

I'm so glad to know you're doing well!! Have a wonderful time on your trip. I'm glad your family is supportive and understanding of what you're going through. My Mom was a big supporter and lifeline when I was going through klonopin withdrawal. I miss her so!! Hug your Mom extra tight tonight. 

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