bijay: amitriptyline / Elavil weaning problems

[bijay]

About 5 years ago I took a lot of antibiotics for what turned out to be a jaw infection.  This resulted in continuing gut problems, (gastritis, esophagitis) and also a condition called burning mouth syndrome.  During this time repeated use of acid-reducing drugs (PPI's) started giving me side effects, particularly insomnia and anxiety, and I wound up being given psych drugs (all at low doses) as well.  

 

During 2017 I got better, with mixed results on weaning:

 

- February 2017: My first attempt to go from .25 mg daily clonazepam to .125 mg clonazepam resulted in almost immediate withdrawal symptoms, such as insomnia, anxiety, extreme nausea.  I went back up to the original dose and the symptoms quickly disappeared

- September 2017:  Stopped taking 10 mg. Celexa cold turkey, with no withdrawal issues.

- October 2017 through December 2017; under the direction of a psychiatrist, reduced from .25 mg to .125 mg with minimal side effects, using alternating doses according to a schedule developed by Cara Tannenbaum.  Very minimal nausea, worked quite well.

 

December 2017: Happened to skip a dose of amitriptyline and realized how refreshed and energetic I felt the next day.  Decided to take it every other day for two weeks, then stop.  Felt great - my dry mouth (a side effect of the drug) disappeared, and so did my burning mouth!  I was over the moon.  Then at about week three I started having stomach pain, and was waking up with acid in my throat;  I was even burping up acid.  I had a vitreous detachment in my right eye.  There were two solid days where my body shook and I had constant diarrhea. I felt manic.  PPI's helped with the acid, but again I developed insomnia and anxiety, and more stomach pain.  The psychiatrist suggested Benadryl, which did not help much. It seemed like everything I tried caused stomach distress.  I had to resume taking 10 mg. of the amitriptyline , and also eventually went back up to .25 clonazepam to help with anxiety.  These are the only drugs I currently take.

 

Since then I have not regained my health.  I lost 20 lbs. those first couple of months, and am considered anorexic.  I eat six small meals a day, trying to gain weight but without success.  During an endoscopy in May 2018 my GI doc at the time suspected gastroparesis, since he did not observe any stomach peristalsis during the procedure. Since I was already following eating guidelines for gastroparesis, I decided not to be tested since I would probably not want to take any drugs for it.  With resumption of the amitriptyline, dry, burning mouth came back in a much more severe form - it flares all the time.  Could I have become hypersensitive to this drug?  I now routinely have swelling in my throat, mouth, and belly. I have also been recently diagnosed with SIBO - small intestine bacterial overgrowth, and IBS.   A nutritionist I am now seeing suspects I may have histamine intolerance, which the amitriptyline probably makes worse.

 

I have a very accurate (to 0.1 mg) analytical scale and can shave the amitriptyline pills down.  In March 2019 I went down from 10 to 9 mg., and had manageable nausea.  I held at 9 mg for six weeks.  When I went down to 8 mg. the nausea and and mouth pain were intense - but this particular time I alternated between 9 and 8 for a week, which I didn't do with the first taper.  Maybe that was a mistake.  At this point, the doctors look at me like I am totally out of my mind - how can such small doses have such big effects?  I feel the amitriptyline is hurting my body, and making my gut dysfunctional (it slows motility, for example, which is bad for both gastroparesis and SIBO).  So I need to get off of it, but this last taper scared the heck out of me.  Words of advice and/or encouragement are appreciated!  Thanks in advance ...

 

 

 

Edited June 4, 2019 by Shep
removed extra space at end of post

[Shep]

Hi, Bijay.

 

Welcome to Surviving Antidepressants.

 

The symptoms you are describing are very common for psychiatric drug withdrawal and likely will fade as you taper off and go into the recovery phase. 

 

We recommend only tapering one drug at a time. Please see:

 

Taking multiple psych drugs? Which drug to taper first?

 

Why taper by 10% of my dosage?

 

Tips for tapering off amitriptyline

 

Here is some more information on withdrawal:

 

How psychiatric drugs remodel your brain

 

Healing from antidepressants. Patterns of recovery video (4 minutes)

 

The Windows and Waves Pattern of Stabilization

 

On 6/1/2019 at 8:38 PM, bijay said:

With resumption of the amitriptyline, dry, burning mouth came back in a much more severe form - it flares all the time.  Could I have become hypersensitive to this drug?  I now routinely have swelling in my throat, mouth, and belly. I have also been recently diagnosed with SIBO - small intestine bacterial overgrowth, and IBS.   A nutritionist I am now seeing suspects I may have histamine intolerance, which the amitriptyline probably makes worse.

 

Please see:

 

Burning Mouth Syndrome

 

Gastrointestinal issues: SIBO, SIFO, histamine intolerance

 

You may also want to check out the Beyond Meds site, as this site has a lot of great information about nutrition and diet for psychiatric drug withdrawal and recovery.

 

Beyond Meds - Diet and Nutrition

 

On 6/1/2019 at 8:38 PM, bijay said:

PPI's helped with the acid, but again I developed insomnia and anxiety, and more stomach pain. 

 

Are you still taking a PPI? If so, please post which one and the dose. PPIs are notorious for blocking the absorption of key vitamins, such as vitamin B12, so some of your symptoms may be from being on a PPI. Please see:

 

Tips for tapering off stomach acid blockers or PPIs...

 

You may find some helpful information to handle your symptoms here: 

 

Non-drug techniques to cope with emotional symptoms

 

We don't recommend a lot of supplements, as many members report their nervous systems are simply too fragile to handle them. However, magnesium and fish oil tend to be calming to the nervous system and many people report they do help. Please only add in one supplement at a time and at a small dose. For more, please see:

 

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

 

Magnesium, nature's calcium channel blocker

 

Please add a signature.  Include drugs, doses, dates, and discontinuations & reinstatements in the last 12-24 months. Also include supplements. This will help us give you the most accurate advice we can. 

• Any drugs and supplements prior to 24 months ago can just be listed with start and stop years. 
• Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago) 
• Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016. 
• Please leave out symptoms and diagnoses. 
• A list is easier to understand than one or multiple paragraphs. 
• This is a direct link to your signature:  Account Settings – Create or Edit a signature.

Please continue to use this thread to document your taper and to ask questions. 

[bijay]

Shep, from the bottom of my heart thanks for your thoughtful and detailed reply.

 

I am not taking any acid-reducing medication at this time, thankfully.  I am aware it can cause nutritional issues, especially with B12.  Ironically, the liquid b12 supplement I started to take because of this concern really kicked in my burning mouth syndrome late in 2016. 

 

Based on tapering instructions here I definitely made a rookie mistake in alternating between 9 and 8 mg. dosages (and I thought I was doing my body a favor).  When I am ready to go down again I will be very conservative and reduce 5% (from 9 mg.) and hold there to see what happens.  

 

I happened to find the SA website from a link from BeyondMeds.com.  The information there about histamine intolerance and hypersensitivity are very relevant to my situation.

 

As an aside, I am having DNA analysis done to hopefully better understand if I have some genetic predisposition to my health issues in general, and histamine intolerance in particular.  The test is performed at Rutgers University, then analyzed by some software.  It's a way to custom tailor nutrition/supplements to my body's needs.  My stomach doesn't tolerate much, so I may need to try IV supplementation, but at least having this knowledge will hopefully give me another piece of the puzzle, and may even explain why this #%$%#! amitriptyline has such a profound effect on my body.

 

Thanks again!     

 

[laydefish]

Hi @bijay & Welcome to the Group! Congratulations on deciding to taper off of these terrible drugs! After reading your post it sounds like you're actually suffering from benzo withdrawal as well which would be from your clonazepam. The process of going  through the withdrawal of the antidepressant can actually lead to you going through withdrawal  from the benzodiazepines. it's all very complex. I'm currently 9 months antidepressant free after 11 years and benzodiazepine free (Valium)  after 7 years! so believe me when I tell you it can be done, you will just have to give it a little bit of time-Hang in there and stay strong you can do this contact me anytime you like- sincerely, laydefish

[bijay]

Thanks so much for your support, Laydefish.  Hearing from people who have done this is amazingly helpful, as doctors look at the small doses I am taking and just seem so dismissive of my symptoms.  It is very interesting that you say I may be going through benzo withdrawal as well. Can you explain how that works, or maybe link to some info on it?  Sounds like I may have to be more conservative in weaning than I thought.  But it is funny, when I went from 9 to 8 mg. of the ami (alternating days for the first week, which I know now is a mistake) the sudden nausea that hit me reminded me of the first time I tried weaning off the benzo.   

 

Have to admit, from all the information on SA I think that I am now hypersensitive to the ami since reinstating to 10 mg. a year and half ago, the dry, burning mouth is just so much worse in particular.  It is scary to know how much this drug is affecting me, along with that nagging doubt of whether I can heal from this.  I hope I can get to be part of the community here, since support from traditional medicine is so limited.  As you said I just need to hang on ...   

[laydefish]

Your welcome @bijay! Unfortunately the guidelines that Dr's follow regarding these drugs are very misleading. So most times they never think it's the medications themselves causing the issues, but we know diffidently, right? Fortunately it's starting to change, for example the drug company Kaiser Permanente has come out in Jan 2019 with new guidelines for Benzo's & Z-drugs (sleeping aids) which recommends prescribing them for no longer than 2 weeks! Crazy Huh?  Any howthis site talks about Benzo Tolerance & cross Tolerance, here's the link  https://www.benzowarrior.com/cross-tolerance,n I think you'll find the site very informative, as well as many success stories. Hope this helps & remember you will heal, that's a given- it's just truly a matter of time!   

[bijay]

Just wanted to ask about tapering when taking an antidepressant along with a benzo.  It looks like the general recommendation is to do the AD first, is that what you did?  In my case I would prefer to do it that way, because the benzo I think does help a little with the pain of burning mouth, although not enough.  (My oral surgeon wanted me to use a clonazapam oral dissolving tablet to help with the BMS, but I refused to add more to my current cocktail - I guess I'm not a compliant patient.)  

[Shep]

14 hours ago, bijay said:

Just wanted to ask about tapering when taking an antidepressant along with a benzo. 

 

What time(s) of the day do you take your drugs? Does the amitriptyline help with sleep? 

[bijay]

I take both the amitriptyline and benzo together in the evening with a late snack around 9:30.  They both help with sleep, the amitriptyline more so.  That was one of the reasons it was prescribed for me - insomnia, especially waking up after only 3-4 hours - and it worked immediately.  (Almost too good, I was easily sleeping 8-9 hours which is unusual for the "old" me.)  Since weaning off too fast and then going back on, it has been less effective.

 

The amitriptyline, however, has this terrible side effect of dry, burning mouth, so that is why I would probably want to wean off that first.

 

 

 

 

[bijay]

How to taper when there are pill weight inconsistencies

 

I am currently at 9 mg. of amitriptyline, after an initial starting dose of 10 mg.  My first attempt at getting off amitriptyline was way too fast, so I want to get it right this time.

 

I have an analytical scale accurate to 0.1 mg, and in fact was able to get a prescription for bigger tablets so there would be less error in measurement.  The tablets weigh a little less than 100 mg. each., so they should each contain 10 mg. of the drug itself, plus binders.  There is also a very thin coating on each tablet.

 

My concern is that there is inconsistency in the weight of the tablets as supplied.  When I was preparing a batch of 9 mg. tablets, the weight of the original 10 tablets varied from 97.2 to 91.9 mg.  I filed each tablet down, taking each down to 90% of its own weight.  Although of course there would also be additional variability in that as well, since it is virtually impossible to hit it right on the nose, but I did my best.

 

It would probably be easier to dissolve the pills in water and reduce the dose that way.  A complication I have is that amitriptyline  is very drying to my mouth and throat, and I think is contributing, if not the main cause, of my burning mouth syndrome.  So I am hesitant to douse my mouth and throat with a liquid version.

 

But the weight variability concerns me.  Should I account for the weight of each tablet, or try to just file down to a consistent weight regardless?    

 

 

Edited June 6, 2019 by ChessieCat
added topic title

[laydefish]

Hi @bijay, Yes, all the experts say to taper the Antidepressant 1st, then the Benzo. I can't advise on tapering because I unfortunately didn't find this Forum until much into my Withdrawal, I was in complete desperation & Brain Fog did a Cold Turkey for both my Antidepressant & Benzo @ the same time, but I was also in Tolerance for several years- big mess! Anyhow, for any specific tapering question, just do this in a post, @ModeratorsName select it from the list & ask your question, this will bring it directly to their attention!

 

[Shep]

21 hours ago, bijay said:

I take both the amitriptyline and benzo together in the evening with a late snack around 9:30.  They both help with sleep, the amitriptyline more so.  That was one of the reasons it was prescribed for me - insomnia, especially waking up after only 3-4 hours - and it worked immediately.  (Almost too good, I was easily sleeping 8-9 hours which is unusual for the "old" me.)  Since weaning off too fast and then going back on, it has been less effective.

 

The amitriptyline, however, has this terrible side effect of dry, burning mouth, so that is why I would probably want to wean off that first.

 

You could start off with a slow taper from amitriptyline, but do be careful with your sleep. If sleep starts to suffer, you may want to remove the benzo first. Although we do advise tapering the AD first, this is more for the activating antidepressants, such as the SSRIs and SNRIs. So please keep a journal either on your thread or at home that tracks your symptoms. You may find this post helpful in how to do that. 

 

Keep notes on paper about your daily symptom pattern and drug dosing

 

18 hours ago, bijay said:

My concern is that there is inconsistency in the weight of the tablets as supplied.  When I was preparing a batch of 9 mg. tablets, the weight of the original 10 tablets varied from 97.2 to 91.9 mg. 

 

This could be due to the fillers. Please note the difference between the active ingredient and the pill weight. Brassmonkey explains the active pill weight versus milligrams pill weight here:

 

On 7/30/2016 at 3:52 AM, brassmonkey said:

The dose weight of active ingredient and the weight of the powder you weigh out will be different because they are not selling you a pure medication.  There is always some sort of filler involved.  For me, I grind up 40mg paxil tablets that weigh 500mg each.  So I get .08mgai (active ingredient for each 1mgpw (pill weight).  This is how I am able to measure the tiny dose (0.42mgai) that I'm currently taking.  The same will be true for the medication you will be weighing, just your numbers will be different.

 

The fillers can cause inconsistencies in individual tablets, but the active ingredient will be the same.

 

18 hours ago, bijay said:

I filed each tablet down, taking each down to 90% of its own weight.

 

18 hours ago, bijay said:

But the weight variability concerns me.  Should I account for the weight of each tablet, or try to just file down to a consistent weight regardless?  

 

Yes, as long as you're reducing 10% (or less) a month consistently from the last dose, you're doing it correctly. You may want to weigh 10 tablets and get an average. You can make up an entire batch of pills that way. 

 

Also, when you get down to the lower doses, you may wish to use the additional weight that comes with your scale to get greater accuracy. If the weight is for 10 grams, then you would need to subtract 10 grams from your amount. 

 

That tip, along with other tips, is mentioned in this post: 

 

Using a scale - more tips

 

Make sure your scale is calibrated. Starting around 3:30 minutes into this video, it shows you how to do this. This is for the Gemini scale, so if you have a different one, please check the owner's manual (and you may find helpful videos on YouTube): 

 

Smart Weigh GEM20 Digital Jewelry Scale Review

 

 

Edited June 7, 2019 by Shep
fixed typo

[bijay]

Hi, I am having problems again - I can't believe how sensitive I am to small dose reductions in amitriptyline.

 

After holding at 9 mg for about 5 weeks, I again tried to reduce the dose, this time to 0.85 mg.  A week after the dose change I suddenly started developing significant nausea again.  It can be overwhelming at times.  Sometimes I feel chilled and dizzy, but lying down often makes it worse. 

 

A couple of days ago I tried one dose of Zofran (4 mg) and it worked pretty well.  Even the following day I felt surprisingly good, much less nausea, chills, or dizziness.  But I know Zofran is basically another psych drug, as it acts as a serotonin antagonist.  I really don't want to trade one problem for another, but I don't know if I can tough it out.  This is the tenth day of nausea.  I am already so skinny and can't afford to lose more weight.

 

The Zofran can be dosed up to 3-4 times a day, so a little bit went a long way with me.  I know I am sensitive to drugs.  Maybe I could take it as needed, or cut the pill in half and see if 2 mg a day works.  I am desperate to get off the amitriptyline because of its antocholinergic side effects, but it seems every time I take a new drug, I regret it in the end.  I'd appreciate any advice!  Help!

 

[Altostrata]

Can you get by with a half-dose of Zofran a day for a couple of weeks? This might get you through.

 

Otherwise, I might updose back to 8mg and coast on that for the rest of the summer. There's no hurry to taper off. Let your nervous system rest.

[bijay]

Thank you so much for your quick reply.  I'm going to try to power through this without the Zofran for a few more days, and see if things improve.  If not, I'll make a decision then.

 

A big part of the problem is that I have gut issues that predate the amitriptyline use, and were made much worse when I weaned off it too quickly.  I waited over a year to try to wean off it again, so I don't think waiting any more is going to help much. 

 

Thanks again!       

[bijay]

I haven't posted anything here for awhile, but have come back for inspiration, especially looking at success stories.  But now I seem to be stuck in a rut with my taper of amitriptyline, and I don't know what to do.

 

From my original 10 mg., I am now down to 5.3 mg.  It has taken over a year to do this.  I have been at this dose for two months now, and desperately want to continue.  But I have also been pretty sick with nausea, diarrhea, cramping, and pain, and my gut just seems to be overrun at this point.  I am very underweight and struggle to eat.

 

Several weeks ago I noticed that after taking my drugs (5.3 mg. amitriptyline, .25 mg. Klonopin) I would get a wave of nausea.  I usually take them with a bit of food mid-evening.   So I thought I would try taking the amitriptyline earlier, with dinner, and see if a larger dose of food would help.  It did the opposite.  I had terrible nausea that night,  a bad bout of diarrhea the next day, and my guts felt like they were going to fall out - I could feel them throb whenever I laid down.  I went back to my old way of taking the drugs, but the effects continued for a full week.  I just felt terrible inside.  

 

When I first started taking amitriptyline, my GI doctor said to take it with some water, and immediately put my head on the pillow - I assumed this was because I would better associate it with sleep (I was having sleep problems at the time.)  So I went back to that method, taking it at night right before bed.  My gut seemed to feel a bit better, the diarrhea improved, and the throbbing stopped.  Sores on my tongue that I had had for weeks healed over for the most part.  I had some weird reactions, like my throat and mouth swelling when eating, but these passed within a few days.  I think since the drug is now being absorbed mostly in my stomach, it doesn't have much chance of reaching my gut, where apparently it can wreak havoc.

 

But now the nausea and diarrhea have started up again.  I really think this drug has damaged my digestive system to the point where I cannot even take it without some reaction.  The one bright spot is that another symptom I have, burning mouth syndrome, has eased up a bit, and my mouth does not feel quite as dry.  I can swallow pills.now with a little less difficulty too.

 

Late last year I saw an ENT who saw how dry my mouth was and was sure that the amitriptyline was the culprit.  He said even at low doses it has a cumulative effect on the mucous membranes; the Klonopin could be adding to the dryness too.  He also noted how it has thinned my vocal chords and would recommend my getting voice therapy once I am off of it.  I hope I can just get to that point.

 

I am just super sensitive to anything I put in my body now.  For instance, amitriptyline tablets are coated because it is bitter.  After shaving them down to my weaning dose, I realized over time that they were burning my mouth and throat;   I now put them in empty capsules so that doesn't happen anymore.  Even the anesthetizing spray the ENT used gave me explosive diarrhea and terrible gut pain for two days - yet I had this done three years ago with no problem.  I cannot tolerate any supplements. 

 

Over two years ago, the first time I tried wearing over a period of two weeks (way too fast), my mouth became extremely moist and the burning mouth seemed to go away.  But eventually there was a cholinergic rebound effect, with so much stomach acid I was waking up with acid in my throat.  My stomach rebelled and hasn't been the same since, even after going back on it at my old dose of 10 mg.  When I taper down now, within a couple days I can often sense a mini-version of this, where maybe I burp up a little acid and my mouth feels particularly moist for a day or so.       

 

I have gone over this with my internist, and she recommended I wait a few weeks before tapering again.   I am just afraid that I am at point where my stomach/gut is not strong enough to take any kind of challenge.  But the longer I wait, the more cumulative damage can occur.  It doesn't help that I have been diagnosed with SIBO, gastritis, and mild esophagitis.   My GI doctor at the time, the idiot who first gave me the amitriptyline, said that during my last endoscopy he observed no peristalsis in my stomach, so gastroparesis may be an issue, although I have not done the definitive test for that.

 

I am doing teletherapy with a CBT therapist who has helped me cope.  Have to admit I have a doomsday scenario in my head where I literally starve to death. 

 

Has anyone hit this kind of roadblock in their taper? 

[bijay]

I am thinking now that changing the way I take the amitriptyline (on an empty stomach, right before bed) may be a bigger change than I thought, and has disrupted my digestion and body as a whole.  I want to continue taking it this way because I do believe it causes big issues if it gets in my lower gut, no doubt made worse by SIBO.  The nausea for me is the worse part, and I don't know if it is now being caused by the drug itself, withdrawal, and/or SIBO.  The big question is when I can taper down again.      

 

 

 

 

[Altostrata]

Is it possible you are allergic to amitriptyline? What have your doctors said about your apparent adverse reaction?

 

What is your daily drug schedule? How long have you been taking Klonopin?

 

Please update your signature.

[bijay]

Thanks for the reminder about updating my signature.

 

I have been taking .25 mg Klonopin once daily since September 2016.  I had reduced that to half the dose using a tapering schedule, but went back up when a too fast withdrawal from amitriptyline was causing insomnia/anxiety.  I have tapered down the amitriptyline from 10 mg. to 5.3 mg, since early last year. 

 

My internist believes I am ultra sensitive to this drug.  She wants me to wean off the amitriptyline and is supportive, but I am so reactive to anything I put in my body that she has little to offer.  Last summer she even helped me obtain injectable vitamins to correct an apparent deficiency, but  those made me feel ill.  With the weight loss I have even asked her about parenteral nutrition, but she said that is used rarely, usually only short-term for Crohns patients to help them recover from a flare.  

 

I do not think I have a traditional allergy to it, but since I went back on it the anticholinergic side effects were much more extreme, making my mouth incredibly sensitive , and also affecting my digestion to the point of my becoming anorexic.  I believe it has also messed with my histamine system in that I now react to histamine-inducing foods (like bananas) with extreme headaches.

 

Thanks for any and all help.

[Altostrata]

1 hour ago, bijay said:

but went back up when a too fast withdrawal from amitriptyline was causing insomnia/anxiety. 

 

When did this happen?

 

3 hours ago, Altostrata said:

What is your daily drug schedule?

 

Do you take anything else at the same time you take amitriptyline? Food?

 

What other histamine-containing foods are in your diet?

[bijay]

The first time I went off amitriptyline was in December 2017.  I was pretty healthy at this time, and was in the process of weaning off Klonopin.  But I happened to skip a dose of the amitriptyline (I had been taking 10 mg. daily for about a year), and realized how alert and refreshed I felt the next day.  So I took it every other day for two weeks, then stopped.  I was actually over the moon; since the mild burning mouth I had seemed to disappear - my mouth so moist and comfortable.  But over the next few weeks, I started having stomach problems here and there - nothing major I thought, but then I started waking up with acid in my throat, belching up acid after eating.   There was a period for three days where my whole body shook and I had constant diarrhea.  At the same time I had eye problems,  and had a vitreous detachment.  A psychologist I talked to at the time said that I had a cholinergic rebound - but taking anything like Benadryl or acid reducing drugs just caused terrible stomach pain.  PPI's caused insomnia and anxiety.  I couldn't stay still, and felt like I was going to jump out of my skin.  I went back to the original 10 mg. dose by late January 2017.  But it took awhile for the acid to calm down, and my stomach didn't seem to function properly - I would have sudden nausea, or it seemed like my stomach was so tight and uncomfortable that food would just sit there.  Within a few weeks of restarting, the burning mouth came back, but much worse this time - I can tolerate no spices, even salt is irritating.  This is probably been much complicated by the pre-existing gastritis I have, and since then I have also been diagnosed with SIBO.

 

When I take the amitriptyline I just take a few bites of something soft, like cooked carrots, to make sure it gets down my throat, along with a full glass of water.  In the past it has gotten stuck in my throat and caused a lot of discomfort.

 

Last year I saw a nutritionist, who suspects the amitriptyline may be the cause of reduced DAO in my gut, and the histamine intolerance.  SIBO may also be a factor, and since then I have removed any histamine-containing foods from my diet, which is already pretty limited.   

[bijay]

I took 4 mg. Of Zofran two days ago and it helped somewhat with the nausea.  Even today I feel less nauseated.  It may have exacerbated my burning mouth, however.  The day I took it, it felt like someone lit a campfire on my tongue.

 

Assuming I don’t get any worse, in a couple of days I am going to do a small drop in the amitriptyline dose, from 5.3 to 5.0 mg. and see what happens.  It’s been over two months since the last taper.  I don’t think the nausea is related to withdrawal, but could be due to the ami directly irritating my stomach and/or contributing to SIBO symptoms.  It seems lately I am especially having problems digesting meat, and I know the ami does reduce stomach acid. 
 

I’m hoping that if keeping the ami out of my lower gut can get rid of the diarrhea I’ve had for months, maybe reducing the amount my poor stomach is getting can help things too.  

[JackieDecides]

On 7/25/2020 at 4:10 PM, bijay said:

Assuming I don’t get any worse, in a couple of days I am going to do a small drop in the amitriptyline dose, from 5.3 to 5.0 mg. and see what happens.  It’s been over two months since the last taper.  

 

what did happen, @bijay ?  after reading this thread I would guess it didn't go well, as you seem to need to taper very, very slowly.

 

how are you now? 

[JackieDecides]

On 7/20/2020 at 9:35 AM, bijay said:

I am doing teletherapy with a CBT therapist who has helped me cope.  Have to admit I have a doomsday scenario in my head where I literally starve to death. 

 

I see this was from last July - but time is going a lot faster for me since the pandamic so that feels like about 4 weeks ago - are you still doing CBT either with a therapist or on your own? 

 

how is your weight?  

 

I have done nothing but gain weight in the last year but before moving to Oregon there was a period of a couple years where I kept losing weight, no matter what, purely from Anxiety. I loved from tons of sun/high desert to Oregon and it was like flicking a switch to where I stopped losing and started gaining. 

 

my point is, I remember how scary it was when I couldn't stop losing. 🤗  < internet hug for you.

[bijay]

@JackieDecides  thanks for checking in on me.  I have been able to reduce the amitriptyline from 5.3 to 4.1 mg since the last post, but I haven't seen any real improvement in stomach symptoms.  I have been able to maintain my weight at least, so I wonder if I will need to completely  get off this stuff to actually gain.  I just don’t each much because my stomach just seems to seize up if I eat a lot.

 

Glad that moving to Oregon has helped you so much.  It must be beautiful there!

 

From your signature It looks like you are completely off psych meds - that is wonderful.  Are you still taking the acid reducing medication?  I have gastritis but am not taking anything currently.  I have a couple of times weaned off Dexilant without much problem.  That stuff was nasty.

 

I should post more, as it is nice to at least be able to say that I can continue to taper, no matter how badly I feel.  Thanks for your support!

 

[JackieDecides]

21 hours ago, bijay said:

Are you still taking the acid reducing medication?

 

yes, I got stuck and haven't been able to reduce omeprazole further. I would still like to. 

 

I've been off all psych drugs since 5/18 and I think I would have written my sucess story already if only life hadn't been so rough. 2019 was such a hard year for me I felt like I was just getting my feet under me when the SAD depression hit about a year ago. then, when I made it through the winter and - again- felt like I was just getting my feet under me and the pandemic started. then the hazardous smoke this summer! 

 

but "whatever doesn't kill you makes you stronger" is probably true so I should be as tough as old tree roots eventually! 

[bijay]

I am so sorry about it being a tough year for you.  My heart goes out to all the folks out west who have been affected by those terrible fires.  I was in shock seeing photos of the blackened skies over San Francisco, a city that has given me such happy memories in my visits there.

 

To answer a previous question, I still do teletherapy with a therapist.  She does help keep me going, and is the kind of person who would be a good friend if I didn’t see her professionally.  She is great.

 

Just a suggestion about stomach acid - make sure you have a good amount of linoleic acid in your diet. (The recommended daily adequate intake per the USDA is 12 grams for women.)  It is an essential fatty acid since our bodies can’t make it from scratch.  It helps protect the stomach by increasing prostaglandins there, which strengthen the stomach lining.  It also naturally suppresses stomach acid and is neuroprotective too.  It is in corn, soybean, canola and walnut oils.  (Look for oils that list high levels of Polyunsaturated fats.) Hope this helps!

 

 

[JackieDecides]

On 10/6/2020 at 8:31 AM, bijay said:

make sure you have a good amount of linoleic acid in your diet.

 

I am unfamiliar with this.

 

I am allergic to walnuts and have always thought of vegetable oils as bad, and try to avoid them. I did a quick google and all I learned was that the affect of linoleic acid on the inflammation response depends on our genes!  so I'd need to know more. 

 

 

[bijay]

 I stopped using canola oil years ago, and switched to oils like olive and coconut, thinking it was healthier.  But neither contain much if any of the two essential fatty acids, linoleic acid and alpha linolenic acid.  I think that may have made me vulnerable to developing gastritis.  Unfortunately the ibs I developed during withdrawal makes it difficult to get much variety in my diet right now. 

 

There is so much conflicting information about nutrition, it is hard to sort things out.    But here is some information from a reputable source about linoleic acid -

 

https://www.hsph.harvard.edu/nutritionsource/2014/11/05/dietary-linoleic-acid-and-risk-of-coronary-heart-disease/

[bijay]

I dropped down to 3.7 mg. amitriptyline two weeks ago.     About 5 days later I woke up one night just feeling terrible, with a malaise that felt like the flu.  This is reminiscent of gastritis attacks I had a few years ago.  The same thing happened the previous dose reduction.  Fortunately I do recover the next day.  I hope the reductions are not aggravating my gastritis now.

 

I get very despondent with the ongoing physical symptoms, especially the dry, burning mouth.  It is getting to the point where even talking is so painful.   I am certain the amitriptyline is a big culprit in this, and I am tempted to try a three week hold instead of four to try to speed up this process.  It seems like any worsening of symptoms I get after tapering lasts no longer than two weeks, so maybe this could work.

 

I am especially down realizing that over the past year of tapering my gut and burning mouth symptoms are no better, and in some ways worse.  Maybe I have to get off it completely to see improvement but despite my best efforts I feel my resolve weakening.  There have been some minor improvements, in that the very noticeable muscle twitching /internal vibrations of the last 2+ years have almost stopped.  I’ve been doing TRE which I think helps a lot with anxiety.  I also have the energy to walk a bit every day.  The issue is the incredible sadness I feel about being so ill.  And I feel like I could be such a complete fool, thinking that this little bit of drug could be doing this to me, thinking I could get some semblance of health back by getting off of this stuff.  There is a lot of evidence that the amitriptyline is hurting me, but maybe it has hurt me past the point of no return.  
 

[ChessieCat]

31 minutes ago, bijay said:

ongoing physical symptoms, especially the dry, burning mouth.  It is getting to the point where even talking is so painful.   I am certain the amitriptyline is a big culprit in this,

 

From doing a general internet search this is a common side effect.  In fact amiltryptiline is used off label for excess salivation.

From https://www.medicalnewstoday.com/articles/325726#uses

Quote

 

 

Uses

Doctors prescribe amitriptyline to treat depression in adults.

 

They may also use the drug in ways that the FDA has not approved, known as off-label uses. For example, a doctor may recommend amitriptyline as an off-label treatment for:

• excessive production of saliva

 

 

 

[bijay]

Thank you @ChessieCat for your doing research on this.   The ENT I saw at Penn said that it causes cumulative damage of the tissues over time, so I am desperately wanting to turn a corner and see an improvement as I reduce the dose.   But it just keeps getting worse, from my mouth to my gut.  I am constantly battling hopelessness.  Does anyone have any stories of improvement before reaching zero?

[ChessieCat]

https://www.survivingantidepressants.org/search/?q=amitriptyline&quick=1&type=forums_topic&nodes=28

 

This is the search results for posts which mention amitriptyline in the Success Stories forum.

 

 

[bijay]

Thanks @ChessieCat you are a sweetheart for sending this  

[bijay]

I was able to drop down again to 3.3 mg. of amitriptyline, and so far so good.  I think this is the first time I haven’t seen a noticeable sleep disruption after reducing, and I haven’t had any incidents of extreme, flu-like malaise that I had the last two reductions.  Nausea also has improved  since going down too.  Haven’t been gaining any weight or expanding my limited diet unfortunately, but I don’t have any expectations about that now.

 

My throat, mouth, and stomach are still suffering though.  The strange sensations of internal swelling and pain do make me despondent.  I do the right things to distract and calm myself, but I frequently crack, with those bad thoughts which basically boil down to what if I never feel good again?

 

I am also getting frustrated with my very expensive digital scale which didn’t consistently tare down to zero the last time I weighed out the doses.  The pill slices now are pretty small and I am wanting to be very careful with this.  The weight of the pills is now only 30.5 mg. for 3.3 mg. active ingredient.   I wish I had the option of using a liquid dose but that would light up my burning mouth and throat.

 

I will in the next week need to decide if I can try a three versus four week wait between tapers.   Speeding up the taper I think will help my mouth, throat and gut symptoms that much sooner, but I know it is a risk.

[ChessieCat]

1 hour ago, bijay said:

I am also getting frustrated with my very expensive digital scale which didn’t consistently tare down to zero the last time

 

Have you tried changing the batteries?