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savinggrace   
savinggrace

Hello,

 

I have been following Surviving Antidepressants, off and on, for a few years but feel I must join now, as I could use some feedback.

 

I have been poly-drugged for 15 years and on anti-depressants for 35 years.  I am not sure how much I should write about how/why all this happened, but surely in the first decades, I just let it happen because I trusted my doctors and had no idea what I was setting myself up for.  Since the internet made information so much easier to get, I have spent a lot of time learning about what these drugs have done to my brain, my body and and my life.

 

I am joining this forum for two reasons...I am a person who has to taper extremely slowly.  In fact, I  just read a post of a man (2012) who planned to take 12 years to taper 25 mg. valium and I thought, "well, that sounds about right for me."  On other forums, I have been almost laughed at when I admit how slow I have been, and must continue to taper.  The other reason I like this forum is that it addresses the poly-drugging situation that so many of us have gotten ourselves into.  This poly-drugging, in my opinion, has made everything so much more difficult.  

 

I guess there is a third reason, and that is that I have followed Rhiannon on BenzoBuddies and before that on a Yahoo group for years.  She seems so rational, calm, and non-judgmental about all this.

 

 I have read many posts about not tapering from a place of feeling w/d symptoms.  What if I said I have been in tolerance w/d (if that term is used here) for at least 14 years?  I have not felt well, and in fact, have been quite sick all that time.  About 6-7 years ago I got the courage, after tons of reading to start tapering.  After making a 1 mg. cut (less than 10%) of valium, and suffering a near-seizure on the 5th day (that's what my doctor told me was happening and I believe him because 1 mg. valium relieved everything), I started tapering .5 mg/ month.  (my signature will explain what happened before that)  I did that for a few a year or so, but "hit the wall" so to speak, and tried .25 cuts (cut and suffer method).  Very long story as short as possible, I only went from 17mg. down to 13 mg. before I was not able to cut any more and remain even remotely functional.

 

A year or so ago, I decided if I couldn't cut valium, I would try another of my drugs.  I have managed to taper 25% with small cuts and holds over a year, but again feel totally dysfunctional and unable to proceed.

 

I think, at this point, up-dosing any of my drugs would require too big of an up-dose, and likely an unsuccessful one at that.  I am holding now, but the reality is, I have many co-exisitng medical conditions, some caused by these drugs I suspect, and some not, that I really can't treat w/ meds as they interact with my psych meds and de-stabilize me immediately.  I suffer a lot.  I have no quality of life.  I am 61.  I can't go back; only forward.  I am currently holding my trileptal cut to give my brain a rest.  There is a lot more to share about myself but this was way too long already.  How long should I hold?  I feel like it will take quite some time before I feel like my brain has adjusted to this 25% cut.  (done in 5-10 mg. increments, holding about a month w/ each cut)

 

Here is my signature because I am not sure where to post it:

Amitriptyline for 20 years and then remeron, 4 mg currently , ambien 10-15 mg. for 5 years and then updosed klonopin to get off ambien in 2011; klonopin 2 mg. for 10 years and then crossed over to valium 17.5 mg in 2010. 300 mg. trileptal for 13 years; tapered down to 225 in the last year. Holding on everything right now.

Edited by scallywag
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mammaP   
mammaP

Hi SG, welcome to SA. I apologise for the delay in getting a reply, the forum moves very fast and I'm afraid your post went down the page very quickly and was missed which is very unusual here. 

 

I am not experienced with benzo tapers or withdrawal so I am going to flag up your post for one of the benzo experts to take a look. They will be able to see what is causing the worst of your symptoms and advise the best way forward from here. I think it is very wise to hold for now.  

 

I put your drugs into the interactions checker and it appears that there are moderate interactions which will not be helping! 

 

Here is the report...

 

Interactions between your selected drugs
Moderate diazepam  mirtazapine

Applies to: Valium (diazepam), Remeron (mirtazapine)

Using diazepam together with mirtazapine may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate diazepam  oxcarbazepine

Applies to: Valium (diazepam), Trileptal (oxcarbazepine)

OXcarbazepine may increase the blood levels and effects of diazepam. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications. Contact your doctor if you experience increased side effects or your condition changes. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate mirtazapine  oxcarbazepine

Applies to: Remeron (mirtazapine), Trileptal (oxcarbazepine)

Using mirtazapine together with OXcarbazepine may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

No other interactions were found between your selected drugs.
Note: this does not necessarily mean no interactions exist. ALWAYS consult with your doctor or pharmacist.

 

Is that right? You are taking Remeron, valium and oxcarbazepine?   

 

You can fill out your signature by  following the instructions here  ...

 

http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

 

I'm glad that you joined us, we are here to help and are a friendly bunch. :) 

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savinggrace   
savinggrace

Hi mammaP, 

Thank you for your kind and thoughtful response.

 

I appreciate you giving me the interaction information.  I am painfully aware of these interactions, and only wish my psychiatrist had considered them when I ignorantly chose to trust him 15 years ago. My situation is extremely complicated, I know.  My doctor has respected me, and my understanding of my own body enough, to let me taper however I need to.  That said, it leaves me playing Russian roulette w/ my brain/ life!

 

 When I could taper valium no longer (very extreme w/d), I couldn't just sit and do nothing on this toxic mix of drugs.  I researched the 3 drugs and found that trileptal had the most effect on the other drugs I was taking, and seemed to be the most toxic w/ many other drugs (many of which I should be taking, but don't for chronic medical conditions) So, on my own, I decided to taper trileptal.  I tapered 5-10 mg. at a time w/ holds when necessary.  I was feeling optimistic about my ability to at least keep tapering trileptal at this slow pace, and then with the last cut, I became completely unhinged...every w/d symptom in the book; totally dysfunctional.  When I say I am complicated, I am not implying that I am special or anything, I just have a lot of complicating factors.  I have been to Mayo and had genetic testing that indicated that I am a slow metabolizer of CYP450 drugs, which essentially involves all the drugs I am taking. (and many, many other drugs if anyone wants information)  As a result, side effects show up quickly, and w/d effects do too. My reaction to most drugs has been termed paradoxical for most of my life.  I suffer many, many other chronic conditions, some of which I feel certain are caused by these drugs, and some have been lifelong.  I take nothing, not even a tylenol for anything.  I take no supplements because even they interact/interfere w/ the metabolism of my meds and cause worse w/d.  As a result, I am in very poor health.

 

I read here, several times, that tapering the most sedating drugs first are probably a good idea, because when or if I ever can taper valium, my GABA receptors will still rely on these other drugs that can have a sedating effect and it may be very hard to get off those.  I am not sure I am sedated much by any of these.  My sleep is horrendous, or non-existent (reason for drugs in first place).  Also, after tapering 4.5 mg of valium in  about 3-4 years, I was in such extreme w/d, I was fairly certain I would not be successful (for now) with any further attempts.  I thought I would give my brain a chance to function w/ less valium, not knowing how long that will be.

 

I am trying to make intelligent decisions about what to do next but these things I have learned....every single person is different and what works for one doesn't work for another, metabolic abilities and rates differ, co-existing conditions complicate things as does age and length of time on drugs, etc.

 

The truth is, I feel so very helpless because I know the exact answer for me is not out there.  I have to figure this out, somehow, and figuring it out has been, and will likely continue to be, excruciatingly slow and painful.

 

I just would really appreciate the opinions of others who have some sense of the insidiousness of these drugs.  I only have my husband to share with and he feels helpless too.  I try to make rational, intelligent decisions based on what is actually going on with me at the time.  I stopped posting on other forums because I was judged (not in so many words, but nearly) as needing to toughen up.  Well, nobody knows how long and how much I have suffered and how hard I have tried to make a dent in this poison I put into my body every day. 

 

How do I keep tapering anything when I never feel "stable" or w/o w/d effects?  Should I just continue to taper when I feel "less bad" as I have been doing? It's hard not to look ahead when i am 61 and know that a lifelong taper is probably the only option and that means I will never experience any sense of wellness in my lifetime.  I guess right now my only choice is to mitigate the damage along the way...

 

I often get no responses because, I think, it's hard to respond when the situation is so bad.

 

Thank you, anyone, who reads this.  I am happy to share what I have had to learn about drug interactions through my experience, though, clearly I am not a doctor or pharmacist, and have only learned through the school of very hard knocks.  You hit the nail right on the head though, mammaP, interactions are a huge problem.

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KarenB   
KarenB

Hello SavingGrace,

 

Thanks for writing about the situation you are in - it is more than likely that other readers of this forum will see their own situation mirrored in yours and feel less alone for it. 

 

Brassmonkey - one of our mods - talks about withdrawal normal.  By that, he means a state where you are not in a wave of symptoms or really struggling, but that things have reached a base-line which is as good as it gets for you.  (Brass - jump in if I'm getting it wrong!).  I use this guideline myself for figuring when to make another reduction - because I never totally get symptom free. 

 

You are probably right that in long-term situations like yours people are less likely to know what to suggest.  It's hard to think about people suffering like this for so long.  Since you've been on this site for a while, you probably know of GiaK and her blog BeyondMeds.  I find her utterly inspiring and reassuring.  If you haven't already done so, take a look. 

 

I am also tapering very slowly.

 

Karen

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SkyBlue   
SkyBlue

Hi Savinggrace,

 

Just wanted to welcome you to SA. You have really been through a lot and I think you'll find good information as well as support here. 

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JanCarol   
JanCarol

Hey Grace - I used to live in Southern Indiana; I miss those rolling hills and autumn leaves and daffodils!

 

I'm so sorry to hear that you've been clustered up with drugs you cannot metabolize - and cannot go off without withdrawal!  Talk about a medical rock and a hard place!

 

I believe that, as you find your "withdrawal normal" as Brass (and Karen) put it - and gradually lighten your load, that many of your other health problems will start resolving, too.  Maybe not all of them - but you should still get better.

 

There are many here who have been more polydrugged than you, or for longer than you, or are older than you.  So these three things - which make you feel discouraged - are not absolute obstacles to your healing.

 

I sense from your posts that you are mostly disabled?  Is your partner also your carer?  Do you prepare meals?  Have kids?  

 

Can you walk?  

 

When you have withdrawal symptoms - let's say just after your last trileptal cut - are they different from your regular "tolerance" symptoms? 

 

Do you keep a detailed journal about your tapers and symptoms?  How long does it take before you settle down to your "usual" symptoms, after a taper?

 

While I am a big fan of holding, There also comes a point where cutting helps relieve your burden.  Harm reduction is about walking the balance between the two.  There are fans of the Ashton relentless cut and cut and cut school, though I tend to lean more to the cut and hold and heal before cutting again school.

 

Ultimately, you will have to decide when to cut next, but we're happy to discuss options and suggestions with you to help you decide what is best for you.

 

Welcome to SA.  Please tell the dogwoods that I said hello?

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Altostrata   
Altostrata

Welcome, grace.

 

When you say you are feeling unwell, what exactly are your current symptoms? What times of day do they occur? Please keep notes on paper about your daily symptom pattern, drug dosing, and when you take your drugs.

 

Why do you say you are in tolerance withdrawal from the benzo?

 

How long have you been holding on your current dosages?

 

I read here, several times, that tapering the most sedating drugs first are probably a good idea

 

 

This is a misunderstanding. We suggest tapering the more activating drugs first. Please see Taking multiple psych drugs? Which drug to taper first?

 

However, all of your drugs can be sedating. In fact, that can be the cause of your symptoms -- your nervous system doesn't like to be so suppressed.

 

If I were you, I'd think about tapering the mirtazapine first, then oxcarbazepine.

 

Please do not worry about the CYP450 issues for now. As you lower your dosages, metabolization will work better.

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savinggrace   
savinggrace

Hi and thank you to all who responded to my last post!  Thank you so much for all your input.  It feels like such a relief to be heard, and understood, (or at least listened to) by people who get it.  The loneliness of this situation is the worst part for me.

 

Good and fair questions from everyone and I would have addressed them in my introduction but it would have been too long!

 

My quality of life, as it is now, and really has been for the last 13 years when I prematurely retired from teaching, is like this....  I sleep erratically at best, and just a few hours a night when I am in acute w/d.  I am very very fatigued (sedating drugs, I know).  From birth I was a sick person.  I had very bad allergies, untreated, for my whole childhood as I was raised in poverty by a single mother w/ 7 kids.  (alcoholic father died at age 40)  I realize now my immune system was sick from birth when I look at pictures of myself as a baby with really bad  eczema left untreated.  My childhood friends remember me as missing school a lot and always being sick.  In college i finally started getting treated for allergies but then started teaching and was constantly sick with sinus infections (kindergartners and weak immune systems don't mix)  which kept me on antibiotics most of the time for nearly 20 years.  3 sinus surgeries later I was able to wean from antibiotics but I think a lot of damage was done to my gut and my connective tissue from those medications. I had headaches all the time in my 30's and into my 40's and the accompanying neck/shoulder problems that come w/ that.  I retired from teaching and started having intense back pain that started my spiral downward activity-wise.  After using narcotics sparingly, (very intense side effects on low doses), I realized I couldn't use them any more and have learned to tough out all pain w/o any medication at all, not even tylenol, no matter how bad it gets.  I even go through painful dental work w/o lidocaine because I get respiratory depression.  Sorry, I think this may be too much information.  The point is I realize some of my health problems are caused by and/or exacerbated by these drugs I am on, and some of it isn't.  I have never been a well person. Also, there is serious mental illness in my family.  I have a sister who is schizophrenic, in a group home since age 17 and lost my brother to suicide at the age of 39.  Alcoholism and depression saturate the blood line.

 

So, up until the last year I would say I suffered from chronic depression, anxiety (super stressful family stuff), insomnia, fatigue, chronic pain, chemical sensitivities, IBS,  and allergies.  Then this past summer I started losing weight again and having really intense digestive issues and gut pain.  Since Christmas I have been diagnosed with Barrett's esophagus (pre-cancerous condition of the esophagus) and gastroparesis (slow stomach emptying).  I am currently trying to adjust to a diet that addresses all my medical conditions which is next to impossible and I am losing about a pound a week.  The meds prescribed for the aforementioned diagnoses interact terribly w/ my regular meds so they are out of the question.  BTW, my diet is organic, natural, and squeaky clean, though not as balanced as it should be because of allergies and IBS and the newly diagnosed conditions.

 

My husband retired 4 years ago to help take care of me.  I was so depressed, and nearly disabled physically then, it was the right choice.  He is the reason I am alive I believe.  I wish everyone had a husband like mine.  He is not a perfect person, but we have been together 45 years, and his life has been altered by what has happened to me (we allowed it to happen, I know), just as much as mine.  We are still each other's best friends and still manage to work together every single day to get through one day at a time.  I realize that I am very lucky here...and I am grateful.

 

I am not totally disabled.  Almost every day, except on the very worst, we walk 40 minutes/ day indoors or outdoors weather permitting.  I do this even when  I am in pain and  when I am fatigued.  On the bad fatigue days, I may walk less, but I have to move as my muscles/joints hurt so much if I don't move some.  My husband does all the cooking and most of the cleaning, but I help plan meals, grocery shop, clean up the kitchen, do the laundry and pay the bills.  I have managed to hold onto a few relationships, though at this point, people just get tired of putting up w/ someone who can't make plans or is sick all the time, so it is just the two of us most of the time.  I can't really concentrate to read but I try, I do puzzles, etc.  Mostly it is a sedentary, lonely life not because I choose that as I am a very social person by nature. On a good day, I am up and about walking, doing errands 3-5 hours but always anxious to get home and lie down from fatigue and pain.   Good days happen maybe a few times a week.  A normal day I would be up and about 1-2 hours. I try to be content w/  a simple life.  I don't think my husband is an enabler as has been insinuated by many.  I have always been a "doer" by nature; an over-achiever.  This is not who I am; I am merely a shell of who I was and what i used to do.  I absolutely know that I do as much as my mind/body is capable of doing.  I push myself hard to keep going and not give in and give up.  I never take myself off the hook to keep trying.

 

Karen, I appreciate your thoughts about withdrawal normal.  I guess that is really what I would call my baseline.  My withdrawal normal gives me the ability to do the above things.  When in active withdrawal, I am bed-ridden.  Active withdrawal for me is severe insomnia, muscle tension, anxiety, depression, sweating, brain zaps, suicidal etc.  I stopped cutting valium a little over a year ago when I was soaking the sheets every single night and didn't get out of bed for 5 days.  I decided (rightly or wrongly so) that I was going to try and live and be minimally functional so I didn't lost everything that has kept me wanting to live at all.  I just am not ready to spend the rest of my life in bed, even though the quality of my life is pretty poor, I still cling to what is left.

 

Allostrata, tolerance w/d to me is the life and the physical/mental condition I am in.  It is feeling absolutely terrible all the time; never having anything near a "normal person's day." It is taking the drugs for the mere reason that not taking them will make me really sick or even kill me.  I also use that term tolerance w/d hesitantly because I know its definition is vague.  I spent a lot of time on benzo boards before I realized that poly-drugging made my situation different.  In fact, recently I was directed here by BB.  I recognized tolerance w/d as described there in myself.  Perhaps you disagree?  Also, I realize I misspoke about cutting the most sedating drugs here.  There are two schools of thought here, and I remember reading the link you sent me, and I actually agree that cutting the activating ones makes more sense.  I have wondered about cutting remeron versus trileptal, but my gut told me I would be more successful w/ trileptal so I chose that.  Remeron is a very close relative of amitriptyline which is an old AD tricyclic, and I have been on one or the other for 35 years.  Admittedly, I am afraid that cutting that will be as bad as valium.  However, even though I have a low dose, (more sedating) I am extremely sensitive to serotonin (horrible,nearly immediate responses to attempts at all the other SSRI's), so I wonder if the serotonin in the remeron offsets the sedative effects.  I don't know...that's why I am here.  I ask myself all these questions all the time.

 

My attempts to keep cutting no matter what are exactly for harm reduction.  I agree that harm reduction is absolutely necessary which is why I refuse to completely stop trying to taper something, no matter how slowly, and I feel good about the 25% trileptal reduction which may seem like nothing to many, but to me it is a victory I claim.

 

I have been holding on my valium for over a year, been on the same dose of remeron for 12 years, and have been micro-tapering trileptal at a rate of 5% or less for one year, holding for 3-4 weeks when the w/d made me bed-ridden.  I think w/ the last 5 mg. cut (just 2% but 25% in a year) my brain screamed ENOUGH!  So that's where I am now....worrying about what to do next.

 

 BTW, I don't know if it matters, but I am on brand-name of all these drugs.  About 6 years ago I realized how de-stabilized I became every refill, and figured out, w/ my doctor, that the whole generic thing really mattered for me.  My brain is on high-alert and it knows when something is different. The month to month swings stopped after I switched to name brand. This costs us a fortune.  Our co-pays are $400/month with the threat of Medicare not far down the road which won't pay for diazepam or valium at all, and seldom pays for brand name.  That would cost us $1000 plus a month out-of-pocket.

 

I apologize for the length of this and promise not to be this long-winded in the future.  It will take a few posts to get the whole story out there.  I don't think I answered all the questions but I think this is plenty for now!

 

I can't emphasize how much I appreciate your time enough.  I moderated for a period of time on a Yahoo board about 5 years ago and I know how much time and dedication it takes.  

 

Jan Carol, the dogwoods aren't too happy....it's freezing here and all the flora and fauna are confused.  We do love the beauty of southern IN though. :)

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JanCarol   
JanCarol

Hey Grace - 

 

 

 

From birth I was a sick person.  I had very bad allergies, untreated, for my whole childhood as I was raised in poverty by a single mother w/ 7 kids.  

 

I think it is allergies to wheat and milk (especially cheese) which started my journey into psych drugs.  I started antihistamines at age 7 - but we never looked at diet - only 'hay fever.'  But when I look at the symptoms I had then - dry skin, constipation, sinuses, constant tonsillitis, teeth grinding = I think it was a gluten/wheat and dairy thing.  At the time, Mom made fresh bread all the time - "wholesome" whole wheat bread, and I was encouraged to eat it as well as milk and cheese and cottage cheese.

 

When I started to get hay fever, they did the allergy skin testing thing, but said I was not allergic to any food.  I then started my 40 year journey through antihistamines.  I still am taking them - they are the hardest thing for me to quit.  I just had an "attack" today and had to take extra antihistamines.

 

 

 

 Alcoholism and depression saturate the blood line.

 

I would look to trauma, too.  It was traumatic for you and your sister to lose your brother - but that all three of you had troubles makes me think that the poverty / environment / home life / school life connection (epigenetics) seems stronger.  You all had the same parents, right?  Any tiptoe-ing around parental demands and moods?  The studies show that poverty is a greater indicator of "mental illness" than is genetics.

 

Your lifestyle sounds a lot like mine.  I look fine, but I stay pretty close to home.  I'm trying to reach out more this year, with classes and social engagements.  I've only had to cancel a few due to illness - but my friends are caring and understand when I cancel.  I'm what I would call "partially disabled" - I look normal - but could not hold down a job.

 

Have you tried coloring?  I find that is a healing distraction that also engages mindfulness and a sense of creativity.  I don't do a coloring in one sitting, but will color on it 15 minutes at a time.  It may take a month or two to complete a picture, but if I pushed it any harder it would stop being fun.

 

From your description, here's a thought.  Taper the trileptal down as low as you are comfortable - but not all the way off.

 

Then switch to tapering the remeron, until you are off it totally.  Then, when you are free of the remeron, go back to tapering the rest of the trileptal.  As an anti-convulsant, it should mediate some of the symptoms of coming off remeron.

 

Save the valium for later.

 

Do you like that idea?

 

At the very least, you can get your drug load down.  Maybe you won't ever get off them all - but you will be in charge of the drugs instead of the other way around.

 

Sorry about the dogwoods.  I love them so much.  And the redbuds.  I was worried, when I was seeing my friends' photos of crocus in January.

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savinggrace   
savinggrace

JanCarol,

 

What a thoughtful, caring reply to such a lengthy, heavy content post!

 

You hit the nail on the head in so many ways.  I think, but most who know me would agree, that I have suffered or continue to suffer from PTSD most of my life.  There were seven of us left at a young age to a mother who had nothing to give but trying to keep us fed and a roof over our heads.  We tip-toed around her moodiness her whole life.  Our household was suppressed.  We never spoke of the father we lost...ever.  I knew at the age of 5, when he died, that there was "shame" attached to the way he died and so I have continued, in many ways, to live my life in shame. (despite years and years of therapy and all kinds of alternative medicine approaches)  I have 3 sons of my own, 2 of whom have succumbed to the ravages of alcohol.  One of them, I believe is mentally ill, not just depressed, but his behavior has always been indicative of some sort of personality disorder.  He has been in and out of legal trouble for over 15 years.  We have tried to help him, w/o being enablers, but he had a baby (!) almost 2 years ago, and we got sucked back into his dysfunctional life until January when I became so sick, physically, we just blocked their numbers.  Thankfully, they live 4 hours from us.  My husband and I have lived in a constant state of "how did this happen?"  We raised our kids in the  "white picket fence" mode...literally, we had one. :) He was a principal, I was a teacher, we did things as a family, supported all their passions/endeavors, took them to church, gave them all the opportunities we could, tried to re-direct them when they went astray, and yet 2 out of 3 of our sons are now basically estranged from us, along w/ our sweet little grandchildren.  The traumas that have occurred in the past decades are too numerous to write.  I believe I have been in  "fight or flight" mode almost my whole life, trying to survive childhood w/ any nurturing, and then trying to be the perfect teacher, wife, mother, friend, etc while navigating over-whelming health problems, emotional problems, and very difficult chidren.

 

My physical stuff mirrors yours.  I too was labeled with "hay fever" and given anti-histamines when we could afford them.  After that 20 years of allergy shots didn't improve anything.  I had no knowledge of the dietary stuff until I was in my late 40's, but I think my gut and immune system were almost shutting down by then.  Since my late 40's, I have tried to mitigate this damage by eating properly, no gluten, dairy, caffeine, alcohol, low sugar, no processed foods, etc. With the latest diagnoses and further dietary restrictions I am losing weight at an alarming rate. I hit 100# this week and I am 5"2".  This isn't terrible, but it will be if it continues.

 

Your thoughts on how I should proceed tapering are kind of what I was thinking....keep tapering the trileptal for a while since,  albeit slowly, I am doing some harm reduction, and then go to remeron, and then back to trileptal.  Did you know remeron has an anti-histamine effect on your body?  This is another reason I worry about tapering it.  I take no meds for my seasonal allergies; all I use is nasal irrigation and hot wash cloths on my sinuses.  I still do wonder if the serotonin in remeron is complicating things, though, as my primary descriptor for w/ is agitated, because of the insomnia, muscle tension, mind-racing, etc. I also am interested in Altostrati's opinion that I should cut remeron now.  Is that because of lethargy, or do you think the serotonin in the remeron could be agitating me.  I was seriously suicidal (as in "I want to throw myself down this staircase") and physically ill, w/i days of being on any SSRI's and despite that I even gave many of them a 4-6 week trial.

 

Thanks again for yo

ur thoughts.  I slept better last night than I have in weeks so I think the holding on the trileptal was the right decision.  It's hard to know how long to let my brain "rest" before proceeding.  That's what I feel it is doing right now...resting.  I know that harm reduction has to be my goal; the reality is I may never get off all these drugs, but I will more than likely die still trying.

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savinggrace   
savinggrace

I have studied and studied how remeron, (mirtazapine) work and I don't understand quite how it works on serotonin receptors.  I do know that when I got on remeron back in 2003, I discovered, when trying to taper, that I slept better at a lower dose, which was a pleasant surprise at the time, and a known fact now, though my doctor didn't know it at the time.  That lead me to believe that the remeron was actually activating me; that is was an accelerator and not a brake.  I am still on 4 mg.,  needing to hold for a bit to feel more stable,  deciding which is going to do me more good, proceeding w/ tapering trileptal or remeron.  I have always had a paradoxical reaction to drugs....ie; benadryl is extreme stimulating to me, high/low doses of drugs, deemed "sure to knock me out" (trazodone, lyrica, seroqual) made me completely sleepless.  I know there is no absolute answer, but is it possible that after 13 plus years on remeron it is doing nothing but giving me nightmares and/or stimulating me.  SSRI's always agitated me to the point of being suicidal,  and I know remeron is not one, but could even the smallest bit of serotonin from this dose, actually be interfering w/ my sleep? My sleep is, and always has been, my biggest issue.  It erodes extremely quickly to even the smallest change in drug dosing.  It is the worst w/d effect  and makes me have to go so slow w/ tapering.  BTW,  I am extremely depressed all the time and don't know which drug would be the worst cause of that...knowing they all could be to blame.

 

Thank you, anyone for your thoughts.

 

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LinLina   
LinLina

I think mirtazapine in higher doses increases noradrenaline and dopamine, both are very activating. As far as I know, the effect on serotonine has not been confirmed yet.

 

In lower doses it works mainly by blocking histamine receptors, which causes the sedative effect.

 

I made the same experience, only after reducing mirtazapine I realized it was very activating (and sedating at the same time, which felt like standing on gas and brake at the same time), but below 7.5 mg it seems to lose this activating effect on me.

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savinggrace   
savinggrace

LinLina,

Thank you for sharing your experience.  I think you have accomplished an amazing amount of tapering two very difficult drugs in what I consider to be a very short time.  I know you aren't having an easy time of it, but you are doing awesome.  Are you cutting about 10% of your current dose and holding until you feel stabile enough to keep going?  What has been the worst w/ symptom for you with the remeron?  Are you sleeping better on the lower doses or is it worse?

 

I suspect tapering remeron will be just as hard for me to taper as the valium is.  I was unable to stabilize after tapering 4.5 mg. of valium and ambient (I have been on these drugs for 14 years together and am super sensitive to even micro-changes in almost anything)  I am determined to keep going.  Interestingly,  I have been sleeping somewhat better (going to sleep before 2 or 3 in the morning) over the last six months with the 25% reduction of trileptal.  I can't figure this out other than the fact that trileptal has been "inducing" the valium (clearing it out of my systems faster) and so the valium and/or the remeron is sticking around a bit longer?  Sigh...I don't know.  I just want to keep going, even if ever so slowly, and make the right choice here.

 

Even though both my husband and I think I am sleeping more/better on the lower dose of trileptal, I still hit periods of extreme insomnia, sometimes 5-7 days long, when I sleep 2-3 hours of fragmented sleep a night.  This all contributes to the fatigue, depression, suicidal thoughts, body pain etc.  I was only cutting  10mg. at a time, and then 5 mg. at a time, and when I couldn't get withdrawal normal, I started 1 mg./ week (sounds pathetic, I know)  Even with this slow rate, I have hit a long insomnia stretch that makes me reluctant to keep going at this snail's pace, but I must.  Otherwise,  I will just keep getting sicker.  Mentally and psychologically, I need to know I am making progress even if it is incrementally small and slow.

 

Thanks for sharing your thoughts and experience.  Hope you have the best day that is possible for you. :)

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LinLina   
LinLina

Savinggrace, thank you :-) I appreciate your words very much as I usually feel still a bit overwhelmed by the experience to became dependent on those drugs.

 

When I was tapering lorazepam, I didn't know that I was fast, because all doctors pushed me to go faster but I was so determined to get through it.

 

With mirtazapine, I am still trying to find a taper rate, that allows me recover while not taking too long. At the beginning, I didn't know how do make a suspension and I just cut quarters of 15 mg tablets, later I cut the quaters again. Somewhere at this point I switched to the solution and experimented with 10 % cuts and 7 % cuts, and after the next hold I want to try 5 % cuts and see how that works.

 

I wait until the symtoms from the last cut settled down, which was usually about 2-3 weeks later. Sometimes I was very impatient and I reduced although still suffering symptoms, then I had to wait longer next time.

 

The worst w/d symptom? I think thats different from day to day, sometimes I can withstand some symptoms that I just cannot bear anymore the other day. One of the most annoying is the exhaustion and the muscle spasms and aches, because this was one main reason for taking drugs. And the noise sensitivity. It almost drives me crazy, because I freak out everytime somebody speaks up or a baby cries or a door is shut. Not easy, living in an appartment in the city. Overall, I suffer from being so sensitive, everything is too much, to noisy, too cold, too exhausting. I cannot stand visiting people or being visited, with a few exceptions. I cannot go and buy food because of the pain and because of the overwhelming sensations everywhere... and so on.

 

However, I was sensitive before, and I always start to have these problems in difficult situations, but now its been so long, usually its just some days or weeks.

 

Concerning your questions about the trileptal, valium and remeron, I don't know, but many of these drugs interact, so I guess it's reasonable to believe your experience. That's very tricky, tapering three drugs. I hope you are going to find a way to minimize the withdrawals.

 

I am sleeping better since being on a lower dose of remeron, crazy, I was increasing the dose to improve my sleep during benzo withdrawal, I didn't know that it was making it worse :-(

 

After a cut, my sleep is worse with a lot of nightmares, but some time later it improves compared to before. However, this effect has diminished somewhat, below 7.5 mg.

 

If you have those bad periods with insomnia, did you try a longer hold like 2-3 months?

 

I would be careful with further cutting the remeron. I've seen some people with long periods of sleep disturbances after cutting remerone too fast. I don't know much about trileptal, it might be the same :-(

 

I can imagine it's very hard to go that slow, but also the snails make it. I know some people who are forced to go super slow, but they slowly improve while tapering, and avoid to get sicker, just like you, and that's more important I guess.

 

It's already evening here :-) I am listening to some nice music and trying to relax as much as possible.

 

I also wish you an acceptable day, with as few symptoms as possible and at least some tiny, uplifting, joyful moments :-)

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savinggrace   
savinggrace

Is this possible?

 

6 nights ago I thought there was no way I could keep cutting anything, even if it was just 1% of the trileptal.  5 weeks previous I had made a 3 mg. cut in 3 weeks and then I suffered such terrible fatigue and insomnia...5-7 nights of little to no sleep. I held for 5 weeks and starting turning to this forum for help.  I had a few "good days" in the middle of that cut...so "good" that I am now wondering if I am experiencing mania on those days...extreme energy, almost a feeling of euphoria, less body pain, feeling like a "normal" person, etc. (usually following a completely sleepless night, which makes no sense. and I usually "crash" the next day)

 

My husband persuaded me to move forward, as slowly as we could because I was not getting any better holding.  So we made a 2 mg. cut (1%) and I am on day 7.  My sleep was remarkably better after the cut, but is now degrading again. I had almost 3 days of better energy following this cut though I definitely am feeling like I am going downhill today energy-wise.

 

To summarize, and I think I have noticed this pattern a few times, I held to stabilize sleep and energy-wise, stabiization never really happened, and I didn't feel ready to cut, but I cut 1% (albeit a laughable amount to many), and I don't feel worse, in fact, I felt better for the first five days.  I don't know what this means or how to proceed in the future.  I feel the downward spiral happening today, but a week ago, before I started a new cut, I felt just like this.  Hmmm...thoughts?  Also any thoughts on the somewhat "manic" days?

 

Thanks,

Grace

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Petunia   
Petunia

Hi Grace and welcome,

I just read through your topic, you sure have had a long and difficult journey, I'm sorry its been so hard for you. Thank you for sharing your story. I'm sorry you didn't receive a response to your last post, but I'm guessing its for the reason you suggested, your situation is very complex and its difficult to know what to suggest.

 

I like Jan's suggestion of tapering trileptal for a while then switching to tapering some of the remeron. You are familiar with Rhi I think, she has been very successful with slowly tapering off several drugs using this switching method. We usually recommend tapering only one drug at a time, but some people seem to do better by working on one drug for a little while and then switching to another one.

 

You may have already seen these topics, but I will post them for you in case you haven't

 

The slowness of slow tapers 

 

Micro-taper instead of 10% or 5% decreases

 

I had a couple of thoughts about what you describe as 'manic days'. One of them relates to my own experience and how I've described some of my own best days. My situation is completely different from yours. I'm drug free after a too fast taper and in protracted withdrawal. I'm recovering, but my process is extremely slow. But over the last 3 years, I've had a few of what we call windows as in  The Windows and Waves Pattern of Stabilization

 

After being mostly bed bound for two and a half years, I suddenly felt completely recovered. I felt great, had my energy and enthusiasm back, I was happy and all my symptoms had gone. The contrast with my previous state felt like euphoria and the sudden increase in energy was like a gift, I wanted to make the most of it after not being able to do anything for so long. So I spent the next 5 days catching up with everything I had wanted to do, most of these things were quite physical and my poor body was no longer used to being so active and so fairly quickly I was experiencing pain, but the 'euphoria' of suddenly feeling like I was recovered was stronger than the pain and so I kept going, catching up with my life, until I was forced to stop. But even though I was unable to move, because of pain, I still felt recovered and extremely happy, until the window finally closed.

 

At the time, I didn't think I was manic, it just seemed normal to be making the most of feeling better and being able to do things again. But looking back, I think I probably was overdoing things because of the sudden increase in energy and my desire to make the most of it. I still wouldn't call it mania though, just a natural response to feeling better after being so ill for such a long time.

 

I don't know in your case, maybe it was the same for you, you had a window, that's great and it might not have been related to any specific drug change. Symptoms or lack of are not always related to something we have done or not done. Recovery usually happens in a windows and waves kind of pattern anyway, which is just another complicating factor in trying to taper and recover from these drugs.

 

I've also noticed a pattern in my own recovery where I sometimes have my better days after a bad night and my worst days after sleeping well. I've learned its best not to over analyze too much, beyond what's needed in order to make good decisions. There's only so much control we can have over symptoms as our nervous system does what it needs to do to recover.

 

You are doing really well given your difficult circumstances and I completely agree that you need to go as slow as feels right for you. Even if it takes years, it doesn't matter, as you continue to taper you are reducing your drug load and improving your health. If you can find a way to accept your own reality, and it sounds like you have, then I think that puts you ahead of many.

 

If your symptoms don't improve after holding, but they sometimes do after cutting, or if you get different symptoms from cutting and holding, then it might just mean you are going to have some symptoms as you taper no matter what you do, but as long as they are tolerable, not getting worse and new symptoms don't develop, I think continuing the way you are is probably fine.

 

Of course if you wanted to, you could try holding for several months to see it you have any improvement, but from what you have written it sounds like the very slow tapering is working quite well for you.

 

Its good to have you here, we certainly understand and support very slow tapering.

 

Petunia.

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savinggrace   
savinggrace

Hi Petunia,

 

Thank you for reading my story, and also your thoughts on my "mania" and such.

 

I don't really think it is mania as I don't have any of the other symptoms of true mania.  The only thing that gives me pause is that it often follows a sleepless night.  I  am guilty of over-analyzing, and I wonder if I get some sort of adrenaline surge when my brain senses it needs something after being deprived sleep.  I often get these manic-like days when we have to travel somewhere and/or company is coming, and I am sure that is stress-related too.

 

I have thought about these days as perhaps being "windows" but I have so much drug still in me it is hard to believe I am getting anything good out of this taper yet.  That said, albeit, the slowest taper ever...I remain proud of what I have managed so far.  I have to claim this as I am guilty of comparing myself to most others and I feel like a big baby or a failure.

 

I can't help but admit that I often wonder  if being really, really hideously sick in bed for a few years would end up with a better result than this slow taper that I probably won't live enough years to even complete.  The thing is I have an awful lot of health problems, many of them caused by the drugs I am sure.  My digestive system seems close to shutting down.  Frankly, it's all a huge catch 22.  I am too sick to taper any faster (not just with w/d) but would some this sickness go away if I could get the toxins out?  My gut (literally) says I would last a very very short time on a faster tapering schedule (been there, done that) but it is very difficult swallowing these pills every night knowing that they caused and are causing so much damage, to my health and my life.

 

For the most part, I know what the reality is, but it is very grim and very very hard to keep my chin up and keep facing the next thing that comes.  BTW, I am on day 10 of a 1% trileptal cut and really feeling it...sleeping 45 minutes at a time, totally fatigued and dysfunctional...so the good days at the beginning of this tiny cut were probably a weird coincidence.

 

Thanks again for your time and dedication.

Grace

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KarenB   
KarenB

Just picking up on what you're saying about digestion.  All these drugs cause such damage to our digestive system.  I imagine you've looked into it, but here's what we have on the topic:  http://survivingantidepressants.org/index.php?/topic/3413-digestive-problems-nausea-diarrhea-bloating-gerd/

 

You could also look up about healing your vagus nerve:  http://survivingantidepressants.org/index.php?/topic/3173-vagus-nerve-stimulation/

 

And BeyondMeds has lots of in-depth thoughts and suggestions on healing digestion.

 

Sorry it's so hard right now Grace. 

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savinggrace   
savinggrace

Hi Karen,

 

Yep, besides the usual w/d symptoms of sleeplessness, fatigue, chronic pain, anxiety, I am now struggling in a huge way w/ eating.  This has been building for some time, but peaked in the summer.  I was already on a gluten, dairy, sugar, alcohol, caffeine, processed food, no raw food diet (no, there is not much left!) and then I got hit w/ waves of nausea that never went away.   I wasn't tapering fast enough to believe it was w/d so I sought medical attention and then a cascade of GI testing continues since November.  First a Barrett's esophagus diagnosis (oh, no, more foods I can't eat) then gastroparesis, and most recently suspicion of a  small bowel obstruction and/or infection. (still waiting)

 

I am having the testing so I know what I am dealing, that's all.  I can't/won't tolerate the drugs prescribed for any of these conditions...been there, done that...any drug I take interacts with my P drugs and gives me scary side effects almost immediately (respiratory depression being the scariest)  I may be unnecessarily paranoid about drugs and/or supplements, but most of this comes from experience, having tried many things over the years, and connecting the dots when I became "unglued" quite rapidly.

 

And so I live with fear, all of the time, of how bad this digestive stuff is going to get.  A couple days ago I just didn't eat and I felt little to no pain.  Clearly, that is not a good plan, but honestly, food is just plain scary to me now.  The pain gets so bad, I want to die.  I am trapped.  All I can do is hope to improve, or not get worse, by this snail's pace of a taper, and take it one day at a time, which I do.  Harm reduction is my new mantra.

 

I am kind of dreading the conversation w/ my GI doctor when he says, "well, if you won't take the drugs, there is nothing more I can do for you" but I know it is coming soon. If there is indeed a physical obstruction, that will involve some huge decisions, but that is a worry not yet necessary.

 

Meanwhile, I am going to an awesome acupuncturist.  It may just be placebo, but It feels like I am doing SOMETHING and not nothing for the terrible state of my physical health and mental health.  Not living in fear, and living in the moment is a lifelong journey for me...

 

Today is a good day.  I will go for a walk in the sun. :)

 

Thanks for the links, Karen.  I have read volumes about digestive health.  I feel like I could be a GI doctor.  Gia's site is awesome as well, though when she started talking about histamine intolerance I had to stop for a while...my list of foods I eat is already way too short!  It is in the back of my mind, though, and I have changed some things because of the new awareness I have about it, much to the annoyance of my husband, who is my chef! 

 

Grace

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KarenB   
KarenB

I understand why you are having the testing - ruling stuff out can feel reassuring.  I imagine that you'll slowly find your way through this, and I hope as you do that you record stuff on here so we can see what pathway worked for you.  I know that's probably a way down the track yet, but one step at a time will get you there. 

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savinggrace   
savinggrace

Hi everyone,

 

I am at a crossroad, and frankly, terrified.  As I have posted earlier, in the past year I have developed severe GI dysfunction in every part of my digestive system.  I am about done with the testing, and have multiple diagnoses, all of which could be addressed with medication, but not one of those medications have I tolerated so far.  Also most of them are contra-indicated because of my psych meds.

 

I have always had mild IBS and have eaten very carefully for at least 10 years.  I did have 2 decades of sinus problems with 3 surgeries and was on antibiotics much of that time, so that certainly messed with my gut health.

 

Since last summer I have started a downward spiral, GI-wise.  My diet is ridiculously limited, and I am developing a fear of eating anything.  In fact, my plan for the last two weeks has been to skip meals, rather than endure the pain any food brings on.  At this point there is nothing I can eat that doesn't bloat me and cause intestinal pain that has now been constant at a level of 8-9 for four long days now.  I am a small person to begin with and am losing weight at a steady rate.  I know that not eating is a very bad choice, and I actually have to eat at times because I am borderline-diabetic.

 

Here's my big question and/or dilemma (I ask knowing that nobody knows the answer, but hopefully I will get some opinions)

 

I started cutting trileptal March 2015 after multiple attempts to continue tapering valium failed.  I was completely bed-ridden, suicidial, you name it, I had it.  I needed to continue to try to get these drugs out of my body.  I have cut 80 mg. of trileptal since then.  I know that for 99% of you that is nothing, but for me, it is huge.  That said, it is merely a tad more than a 20% cut in 14 months.  I have been on the same dose of trileptal for 13 years prior to tapering.

 

It does seem that my GI problems started to get worse w/i a few months of starting to taper, but I didn't really consider it w/d.  I just figured it was just caused by all the years I have been taking these drugs.  Now I am seriously beginning to wonder if the rapid escalation of the GI disease has been caused by the trileptal tapering.

 

I am really not considering up-dosing.  I don't think that mentally I can accept that.  I would have to updose back to where I started and I know there is a good chance I would not feel better.  Also, some of my symptoms have even improved w/ the tapering of trileptal.

 

I made a 1% cut 3 weeks ago. (2 mgs.)  I was going to make another one in a week or so.  However, I am so sick right now....bloated w/ one bite of food, constipated, dehydrated,etc.

 

Should I consider holding at 220 mg. for a while?  I have read so much about long holds, kindling, things of that nature.  They don't make that much sense to me.  It seems like time is our friend when tapering UNLESS the drugs are causing severe illness.

 

The pain is unbelievable.  I have not gone to the doctor or the ER because all they will do is give me pain meds that will interfere w/ my other meds and/or cause respiratory depression.  ( I have experienced that several times; so often I don't even take tylenol)  My GI doctor is about ready to give up on me.  I would, too, if I were him, because all he has to offer is drugs which I refuse for very good reasons.  We both know this could all be caused by the drugs and  I know that I just can't go off them, or even go off them at whet is for most, a reasonable 10% rate.

 

I would really really appreciate opinions on this.  I hesitate to be so open because I feel humiliated by how slowly I have had to taper.  I could write pages and pages about the reasons behind my inability to do what most can do, but suffice it to say, it isn't for lack of trying, or fear.  Yes, I am afraid, but yes, I have tried faster rates and it has always been a disaster.

 

If I don't start eating soon, I will wind up in the hospital and then I just don't know what will happen...also I take name brand drugs; I am terrified about that because I know they use generics in the hospital, and for me, there is a huge difference between the two.  I learned that the hard way also.  I have no idea what I will do in the hospital because I know I can't take my own meds while in there.  Who will take a 12.84 mg. dose of valium, 220 trileptal, and 4 mg. remeron seriously anyway?  They will give me standard doses of generic drugs and I will feel it all immediately...I am THAT sensitive.

 

Please help.  Thank you for anyone who read all this.

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AliG   
AliG

Grace.     I'm sorry for what you're going through .  Do you think the tapering is the problem and not the drug itself ?  If that's the case I would hold and not make any more changes, for now.  Could you possibly find a new doctor ?  The  G.I doctor doesn't sound helpful. 

 

When did the severe pain start ?  I think you should probably get that checked out. You could have some tests done without necessarily taking drugs.

You say you've had GI problems for 10 years, but did this get worse when you started tapering ?

Did the pain start 3 weeks ago , when you cut your dose ?

 

In the meantime , have you tried smoothies or protein shakes, if food is a problem ? Maybe with a little more information , we can hopefully work this out .

Ali

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savinggrace   
savinggrace

Hi Ali,

 

I did not iterate my Gi problems as I had stated them earlier in my intro and didn't want to be redudant, but here they are...

 

I started investigating this when I had constant nausea 5-7 days/ week.  Also, I was started to not eat a couple days every week because of abdominal pain. No reflux or anything like that.

 

Barrett's esophagus: diagnosed w/ endoscopy in Dec. 2015 (pre-cancerous condition of esophagus; but no cancer cells yet; only 1% develop cancer and I am not even symptomatic)

 

Gastroparesis (likely cause of nausea and pain)  It means slow stomach-emptying.  I had a stomach emptying test in January 2016 and a recent CT scan of my abdomen which both confirmed the gastroparesis.  The former one labeled it moderate; I haven't seen my doctor since the CT so the info I have is all from the nurse.  She did say that most of the barium (ugh) liquid was still in my stomach after 45 minutes confirming gastroparesis.

 

Severe IBS; constipation and bloating. The bloating has made me skip a lot of meals.  Last colonoscopy was Dec. 2013.  Diagnosed with post-infectious IBS.

 

Scheduled for another endoscopy to biopsy my small intestine to eliminate celiac (negative on blood work) and or small bowel infection.

 

I have lost nearly 20 pounds since January.  I am 5'2" and weigh less than 100# and going down, slower, but steady.

 

The pain is getting worse.

 

I DO think this all may be caused by my meds.  I don't know if it is reversible even if I were able to get off my meds.  I feel pretty sure that a rapid taper, really any taper rate, but a rapid taper for sure, will make all this perhaps unbearable.  I am using all the will power I have to not go to the ER almost daily for pain meds. I haven't done that in a decade.  I take nothing for any of the above conditions.  I take nothing besides my psych meds.  I have a ton of other co-existing conditions but this seems life-threatening.  I am not at the vomiting stage of gastroparesis yet, but if it keeps getting worse I will be. 

 

I have a ton of allergies (life-long) and some new and chemical sensitivities.  I have tried EVERYTHING nutrition-wise.  I have been on a gluten, soy, milk, egg, processed food, caffeinne, alcohol, etc. all organic diet for a couple years.  I am borderline-diabetic so I can't fast completely for pain relief but I eat as little as possible.

 

My only pain relief is lying down with a hot water bottle and hot baths w/ epsom salts.   I use distraction, laughing, crying, praying and friends for pain management.

 

I feel TRAPPED...the thing is I know I have painted myself into this corner but I have tried everything to get out of it.  I feel badly reaching out because I know there are no real answers.

 

I am looking for opinions on whether I should just stop tapering anything for a while and see if this settles down.

 

This extreme GI stuff (besides the IBS which was manageable) did start within a couple months of tapering 30 mg. of trileptal, 10 mg. at a time.

 

I feel trapped because any taper rate, even the slowest one, will keep me on these drugs, likely for the rest of my life.  I am going on 62.  I have the 1298C MTHFR mutation which causes depression, schizophrenia, and addictions (I have a schizophrenic sister and my brother/father died from alcohol and I have 2 alcoholic sons).  I also have CYP450 enzyme deficiencies which make me a slow metabolizer and most of the drugs I are on are affected by it.  Trileptal induces CYP450, and is also metabolized by the same enzymes as valium and even remeron according to some charts, so I thought tapering trileptal, after needing to hold on the valium was a good choice.(3 drugs competing for the same enzyme)  ANY drug or herb or supplement or even some foods affect my metabolism of these drugs.  I am very unstable and live a barely functional life.

 

My GI doc is good and wants to help but he insists the drug I need (domperidone) does not cross the blood-brain barrier.  ANY drug I take causes me respiratory depression; even topical anti-inflammatories do after a couple applications.  It is very scary being me.

 

Boy, it's harsh to see this in print.

 

Thank you for reading this.  I hope you can see that I have really approached this from every angle.  In my intro, I explained how my husband and I both retired 5 years early to help me and have spent every penny we have trying to find alternative therapies to help (I suffer from chronic pain also, especially back pain).  There is pretty much nothing I haven't tried, or have not been willing to try.  This GI stuff has thrown us a curve ball we didn't expect.  It seems to be life-threatening.

 

Again, I didn't want to be redudant but there it is....  I am always willing to listen to other's opinions, and if I don't try them it is only because I already have.  This question of holding (unpalatable though it is) is the most immediate problem I face.

 

Thank you very much.

Grace

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KarenB   
KarenB

Most of that is beyond my knowledge Grace, but it did bring to mind GiaK's blog BeyondMeds, which has a wealth of information about navigating one's way through w/d and gut issues (among other things).  And she has been successful in doing so. 

 

The hard thing is, that it's really trial and error as to whether holding or tapering is what you need.  That said, you should always keep at least 4 weeks between drops, and I think you are at week 3 now?  Another member, SongBird, has been having similar deliberations of late, as has LexAnger.  You might glean something from their threads. 

 

Hugs,

Karen

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savinggrace   
savinggrace

Thank you Karen. As I post to others, there are no absolutes here, I know.

 

Yes, I have read much of Gia's work. I admire her so. I had to stop reading for a while because (perhaps rightfully so) she had me questioning a whole new group of foods (histamine foods) and my list of foods I feel safe eating is almost blank.

 

Sometimes too much knowledge gets in the way. I just wish someone could tell me if a long hold would get this GI stuff under control

as it is becoming life-threatening. I guess I will keep taking this one day at a time. I am trying hard to stay out of the hospital as I think it will likely really mess with my well-being in every way.

 

I feel like a hopeless case but I will carry on and keep trying, 1% at a time. It helped me a lot when you said some of your symptoms have improved as you go lower. I feel the same, while others get worse.

 

Hope you are feeling better as time goes on. Thanks for your support.

 

Grace

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KarenB   
KarenB

I just don't know if a hold on it's own can fix GI issues, or if another approach is also needed.  If another mod knows, they'll hopefully chip in. 

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savinggrace   
savinggrace

Yep, I don't think a hold will fix this. I just wonder if it will slow down the symptoms to a tolerable level. Unfortunately, I think there is a good chance that there has been irreversible damage, or at least damage that won't be repaired until years after I am off all these drugs, which I fear is not possible. I will not hold unless the GI stuff and the tapering symptoms become too much to handle. Well, they already feel that way but I am not willing to give up on tapering. I have a procedure in 2 weeks that requires conscious sedation; I chose the "least bad" option, but is not good. None of this good, in fact I fear much of what happens going forward will be hard to control. Trying to take it one day at a time.

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savinggrace   
savinggrace

Yep, I don't think a hold will fix this. I just wonder if it will slow down the symptoms to a tolerable level. Likely not. I just don't know if I can handle w/d symptoms and this amount of pain and illness. Every day I eat less and less.

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Altostrata   
Altostrata

savinggrace, you must eat. Eat some of the highest-calorie food you can tolerate. I lived on buttered croissants for a while.

 

I imagine you've looked into all the diets, and tried an exclusion diet? I've had to go on a histamine intolerance diet myself. My symptoms are relatively mild compared to yours, but the special diet has helped. Histamine intolerance can cause indigestion, acid reflux, and gut pain.

 

As for your tapering -- we often see that holding for a while helps people stabilize. But your intuition tells you to continue tapering Trileptal even though your withdrawal symptoms have gotten worse. If you feel that's the best for you, that's your decision.

 

(Why are you not going off Remeron instead?)

 

Otherwise, we can't tell you what the solution will be. You only have a few options:

- Continuing to reduce

- Holding steady at dosages

- Quitting suddenly

- Increasing dosage of one drug or another

 

Very sorry I can't unravel this for you.

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savinggrace   
savinggrace

Thank you, Alto. I don't really expect anyone to unravel this for me; I guess I just look for opinions.

 

When I started on here, I brought up what to taper going forward. Sleep is what got me into this 35 years ago and has always been my main issue. I strongly suspect that tapering remeron will render me unable to move forward as it is sedating. (Or is it any more as I asked earlier) It was suggested that I continue tapering trileptal for a while, as I was making some progress while remaining functional. I admittedly get very depressed and suicidal when I go for too many nights w/o sleep, so I took the suggestion that I continue to taper trileptal for a while, then take a break from that, and taper remeron. I was under the perhaps, mistaken, impression that we taper the more activating drugs first. If you think I should give remeron a try now, I would appreciate knowing your thoughts.

 

I am trying so hard to eat. I have little to no pain when I eat little or nothing. With a ton of food allergies, gut issues etc, figuring it out is a full-time job. As stated earlier I haven't tried the histamine diet yet, but I have adapted many of the principles (fresh food, etc. and already don't eat most of the foods. I will study it some more but I think a pure approach to that almost leaves my food list blank. I would have to figure out other foods to add in.

 

Buttered croissants...even if for every meal would be heaven. I break out in rashes w/ gluten and have severe milk, egg, and casein allergies. I have had severe mold allergies since birth so fermented foods are out as well. Raw foods are out of the question w/ gastroparesis. Every meal is a problem and I absolutely know I have to eat to live. Sometimes the pain overrides the knowledge.

 

I am eating, when I can, small portions of puréed vegetables and 2 oz. poultry or fish. I eat rice cakes w/ a little nut butter to fill in. I am keeping a journal but can't connect too many dots yet.

 

I am not sure I would ever recover from a cold turkey off any of these drugs. I know this a terrible situation with no clear choice. I know my options are those you listed. I am going to keep tapering, something, somehow. My gut and my brain tell me there is no dose to go back to on which i will be better. I haven't been anything near stable for 15 years.

 

I would appreciate your thoughts on remeron vs. trileptal cutting. I will try to have an open mind about it.

 

Thank you for your time. Your devotion is remarkable.

 

Grace

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savinggrace   
savinggrace

One more comment, Alto. I don't really know if this GI stuff is w/d symptoms or caused by the drugs. I wish I knew. If it was w/d I would definitely hold for a while. I just think the drugs have/are causing all this. I think it may have been a coincidence that this stuff all started accelerating after starting to taper trileptal, but I just don't know. I know there are no clear answers here and that's why I am very afraid. I feel like I have to figure this out myself, as I do most everything, but I see no path as clearer than the other. The only thing I know for certain is that a rapid taper of anything would be disastrous.

 

Thank you again.

Grace

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LinLina   
LinLina

Grace,

I just want to say I am following your posts, and I am very sorry you're in such a difficult situation: Not knowing which step to take next because you might suffer side effects but tapering fast is not an option as well because of symptoms getting much worse :-(

 

I'd like to share a thought about your drugs and which to taper first, but it's just a guess and I am not very familiar with trileptal. However, I have read that trileptal (Oxcarbazepin) does effect the blood level of many other drugs. So, if you change trileptal, you might change the amount of the other drugs in your system as well. If that's the case, your system has to deal with multiple drug changes instead of one by changing the dosage of trileptal.

 

Please, anyone correct me if I am wrong with this. But maybe it could help to keep your system more stable if you manage to get the other drugs of your system first.

 

However, it still is a very difficult situation you're in, all of those drugs are hard to taper especially when your health is bad.  I hope you can find a way to get enough calories into your body, this is so important.

 

Hugs,

Lina

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AliG   
AliG

Grace. If you can 't handle food right now , liquid calories such as soups, smoothies and protein shakes could help you keep up your nutrition. 

I think there are so many variables here, that it's anyone's guess what is going on , right now.  Maybe, look into the diet side of things right now, and if we can get that sorted, maybe the rest will eventually fall into place.

I hope so.

Ali

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Altostrata   
Altostrata

Grace, it sounds to me like you have a gastrointestinal illness that may be unrelated to the drugs -- although every foreign substance you put in your body complicates your situation.

 

Having had gut problems myself (mostly cleared up now), it also sounds to me like the lining of your gut is damaged, that is the basis for the hypersensitivity. I would look at gut healing protocols.

 

We don't really counsel people about healing gut problems here, there's not much more I can add.

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savinggrace   
savinggrace

I understand, Alto. I am just looking for opinions on which drug to taper and why. If I post any digestive questions, they are really directed at the impact on withdrawal (i.e.: probiotics, histamines, etc) I will continue to read Gia's work and the work of other experts wIth GI issues. It's just that the two are so inter-twined and hard to separate.

 

I do participate on a GI forum and will continue to search elsewhere for help, though I can't find much help from people who address both.

 

After reading Lin LAN's response, I started to explain my reason for tapering trileptal instead of remeron further. I have not finished that yet, but I will. It's all, as she pointed out, quite complicated, and I do realize there are no clear answers. If you read it, and you have an opinion, I would appreciate hearing it. I do realize no one has THE answer.

 

The questions I have posted lately are the big questions that I can't find answers to because there are none. I am merely looking for opinions from people w/ experience. I don't know where else to go. I will be done w/ my questions soon, and will continue to try to make a positive contribution to others when I can.

 

My GI issues were only brought up because I have to wonder about cause/effect and they were answering other's questions as well.

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mammaP   
mammaP

Hi Grace,  my daughter has the very same gut symptoms that you are experiencing. She has a hiatus hernia and had all the symptoms a few years ago. Was very ill until she had surgery to wrap muscle around the esophagus. It became life threatening when her esophagus closed due to inflammation caused by acid reflux and they decided to do the surgery.  She was fine for a few years then started to be ill again and all the symptoms started again. Now she is back where she was at the start and needs further surgery. The valve that closes the stomach is 2cm open, all the time so she is vomiting and the food is not moving through the gut.  

 

She tried domperidone but it made the pain much worse, then tried another drug that caused parkinsonism. She has never taken any psych drugs.  She has PPIs to stop acid production, and B12 shots because she isn't absorbing B12 due to the PPIs.  Doctors want her to take the drugs but she has insisted on seeing the surgeon who performed the first op and will get a further op to redo the repair. Surgery is preferable to her than a life on drugs. 

She can't eat very much at all, everything makes things worse, so she has protein shakes that she mixes with water instead of milk as milk also makes her ill.

Bones boiled to make broth are very soothing and healing, and put in finely chopped vegetables, then blend it smooth to drink. Fruit is too acidic but bananas are ok eaten in very small amounts.  Everything has to be in tiny bite size amounts several times a day. Meals are out of the question.  Her son is a personal trainer and nutritionist and told her which shake to buy but they have casein which I believe you are also allergic to? 

 

If you can sip broth and liquids and keep them down until you have a diagnosis and treatment it might be better than trying to eat meals. I am posting this as a mother and not a mod, and sharing my daughters experience.  I also had an awful time with my gut when I had gallstones and only ate bananas and porridge for several months until I had surgery. I lost lots of weight and reacted to foods that I had been fine with before.  After surgery I was much better but improved more when I tapered off the PPI.  

 

As a mod I would say  to research any drugs carefully as some are actually antipsychotics used as anti emetics and would need tapering if taken for a  long period. I wouldn't change anything with your drugs and risk upsetting your nervous system any more than it is right now. 

 

I hope the procedure shows what is wrong and they can make it better for you. Its frightening being in so much pain and wasting away. 

I also want to say thank you for the way you support others while feeling so bad yourself, I am sure everyone appreciates your input. 

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