daddybuggaorange: Really struggling

[daddybuggaorange]

Hello all,

 

per the instructions I'm posting my introduction.  I was on Zoloft for mild anxiety from 2002 to November 2014.  We went to China to adopt a 3 year old son, when I got really sick with a GI bug.  I got home to the US and no one could diagnose the issue, told me it was in my head, and started throwing psyc meds at me.  They  put me on Klonopin with Xanax which I developed tolerance to and crashed in December of 2014, but didn't know what was going on.  February of 2015 they took me off Zoloft and put me on Amitriptyline, the week after took me off Amitriptyline and put me on Cymbalta.  I started tapering Klonopin February 2015, to "help" I was put on Seroquel which was HORRIBLE.  I continued to taper, got off June 2, 2015 from Klonopin and felt good for 3 weeks then crashed again while on Cymbalta and Seroquel. Switched back to Zoloft from Cymbalta August of 2015, and started tapering Seroquel which did NOT go well.  Dyskinesia, autonomic muscular issues, etc.  So they put me on Compazine which was even worse.  To help coming off Copmazine I was put on Remeron.  Around the first of November 2015 I ended Compazine, felt good for a couple days, then started having excessive agitation, anxiety, mood disturbances, tremors, shaking, chills and was told I was having serotonin syndrome.  I had to stop Zoloft abruptly and things got a bit better, but stayed on Remeron.  Still did not feel myself, mood and sleep disturbances, then discovered that Remeron doubled the risk for my GI infection (yes, they finally discovered I had c. difficile) so stopped it as well on December 29.  3 weeks ago my psyc tried Clonidine, which was bad then then 2 days later Buspirone which was even worse (caused significant horrific deep depression), then tried 1/8 of a 25 mg Zoloft which about destroyed me.  Been off everything since then (3 weeks). Over the past year I've been on 31 different meds (not all psyc)

 

Things are NOT going well.  I have depression which I never struggled with before all this, waking with severe agitation/anxiety at 4am every day, sleep disturbance, horrendous body aches/flu like symptoms, leg pain, nerve pain, numbness and tingling in my feet, ringing in my ears, weakness, fatigue, diarrhea/constipation/abdominal pain, food intolerance, general sense of malaise, visual disturbances with migraine like symptoms (seeing bright lights, blurred vision), incredible dizziness and vertigo.  Significant difficulty concentrating, lack of motivation, loss of interest in things.  During the day I'll have random periods where I will feel a sense of impending doom and/or agitation.  Then last week my legs started giving out on me...there are times when I am shuffling around the house like I have MS or something and my legs buckle to the point where I've fallen a couple of times.  I would have instances of this while experiencing serotonin syndrome and also while doing a "cut" from Klonopin, but the last 2 weeks it has been sustained.  This week the flu like symptoms have ramped up...I've never had such severe flu symptoms before, the pain is unbearable unless I take 800mg of Motrin which is starting to eat the lining of my stomach.  I also have severe stiffness, particularly in my hands, legs and arms to the point where I have difficulty moving in the evening. 

 

My wife believes this is either "withdrawal" or lyme disease.  There is also the brain-gut connection issue with my infection, but I had a Fecal Microbial Transplant 3 weeks ago which is supposed to restore the good bugs...

 

I also have severe adverse reactions to ALL psyc meds and anticholinergics including Benadryl. 

 

I struggle with thinking that I need something to "stabilize" me because I feel so badly, but deep down I know that I wasn't like this before, so I am hoping and praying that my CNS heals and I can get back to my pre-China state. 

 

Life is unbearable at times, there are very few times where I have a couple of hours of relief, usually at night.  That's my story...

Edited July 19, 2016 by scallywag
tags added

[Fresh]

Welcome to the site ,  glad you found us.    

As you read more around the site , you'll realize that all the symptoms you've been experiencing are withdrawal

symptoms from the range of meds you've been on and off in the past 12 months.  Your cns is in an uproar and

needs time to recover.  

 

See Dr Joseph Glenmullens' Table of Symptoms for the diverse symptoms that may present.

http://survivingantidepressants.org/index.php?/topic/2390-dr-joseph-glenmullens-withdrawal-symptom-checklist/

Are you taking any medications at all at the moment?   It's important to know if you're taking anything that may be 

further exacerbating your situation.

 

There are lots of ideas in the Symptoms and Self Care section to deal with different symptoms.  See the thread on

Magnesium , it will help with muscle stiffness and pain.

[daddybuggaorange]

I'm not taking anything right now but vitamins c,d,e, magnesium, omega 3, and zinc. I've tried every supplement out there, gave up, and threw them all away. The only thing that seemed to help was phosphatidylserine but I don't want to do anything to further upset my CNS.

 

I started researching CET, I'm a bit skeptical but it seems like there is some promise to it. Did it help you Fresh?

[Fresh]

I believe it did and is continuing to DBO. I've documented it in my thread.  

 

After a humungus crash in 2014 , I stabilized on 50mg pristiq.  Waited 8 months till my  first 10% decrease

(Feb. 2015) , and experienced four weeks of disturbing symptoms (cold/flu for a week , hypomanic for a week ,  

then 2 weeks of feeling like a bear in hibernation , all I could do was sleep and eat a bit).

Then I started CES , and had NO w/d symptoms for my next decreases till October.  I did a big cut then (17 1/2 %)

and did get some symptoms , but nothing like that first 10%.  Most recent cut from 25mg to 22.5mg ,  almost zero

w/d symptoms.  This means I'm having a more constructive , enjoyable life as I'm tapering than I've been able to

have for 20 years.

So yes ,  I'm a big fan.  

 

[SkyBlue]

That all sounds awful. Like Fresh, I'm glad you found this forum. 

 

Obviously if you've had the transplant, you've probably looked into taking probiotics? 

 

Also I just read this other thread where someone had a terrible GI stuff after going to China. 

http://survivingantidepressants.org/index.php?/topic/11110-rain-dropped-dose-of-lexapro-feeling-so-bad-please-help/page-3#entry207589

[Fresh]

All the symptoms , the feelings and sensations are temporary.   You will recover , but it's going to take time.

See The Windows and Waves Pattern of Stabilization

[Altostrata]

Welcome, daddyb.

 

Gut problems from visiting China are notorious. When I did it about 25 years ago, I came back with a bout of illness such that I'd never had before or since.

 

Very sorry you were sucked into the psychiatric drug vortex to treat this.

 

Yes, you will need to restore your gut health. Has the fecal transplant helped?

[Meimeiquest]

So I adopted a baby there too in 2002. She had giardia (via standard testing), and I got sick a few weeks later. Long story short, I just had extensive stool testing including DNA analysis ((I finally have a great pdoc who says when there is trouble in the brain, there's always trouble in the gut). Guess what...I tested positive for giardia. You could have knocked me over with a feather. That's only one of the things we are finding, it's quite complicated...but I would encourage you to follow that trail. I found our adoptions extremely stressful, both the emotional impact of taking a little person so far from their roots, the logistics, everything. I love adoption, but it is extremely complex to me with losses all around. I think in that state our natural immunological defenses are lowered.

[daddybuggaorange]

So I am really struggling with trying to understand what is happening to me.  Reading through all these posts it sounds like no matter how long someone has been on a med, how short the exposure is, etc. it can impact you at any time and in the window/waves pattern?

 

Up until I tried Buspro and clonidine on 1/14/16 I was holding my own, had NO depression.  I had issues with sleep and anxiety, some muscle pain/weakness, etc. but generally was doing well.  After starting/stopping the clonidine and buspirone I had SEVERE depression on Saturday 1/17/16.  I was flying to Tampa for a procedure to address my infection, got off the plane, and felt like I had been hit by a truck.  I've never been so dark...I couldn't put a rationale thought together, could hardly speak with my brother and sister in law, racing suicidal thoughts.  It was BAD.  I would literally wake up in the middle of the night and be thrashing in bed, contorting, wanting to tear at my skin, hit myself, etc. which I've NEVER had before.  The depression mostly lifted by Wednesday that week, but ever since then I have been having waves of depression with no motivation, significant body aches/pains, numbness/tingling, agitation, anxiety, difficulty sleeping at night, and such muscle tension that my legs give out on me.  Things usually calm down in the later afternoon, but not always.  I have had windows...last week several, this week only a couple.

 

Along with this all, on January 18 I had a fecal microbial transplant which basically changes the bad gut flora for good.  Now I have a dietitian who is calming that all of my psyc issues are due to the FMT and an unbalanced gut.  I know there is a brain/gut connection, but I'm supposed to be full of GOOD stuff now and I don't know how bacteria could cause this significant of an issue, esp. since it started BEFORE the procedure.  

 

I don't know how two tablets of Buspro and/or less than 1 week of Clonidine could have had such an impact.  I just need someone to re-assure me that my CNS isn't permanently damaged and that I'm not going out of my mind :-)

 

[daddybuggaorange]

So I tried reinstating just a "chip" of a 25 mg zoloft 4 weeks ago and had a severe adverse reaction.  My symptoms over the past week are getting increasingly more severe to the point where I am having significant difficulty functioning.  I don't know what to do...Remeron was the last med I quit (first week in January) I was only on 3.75 mg so my p-doc told me to just stop.  At this point it is a crap shoot if I will get better or worse?  This topic is scaring me...I thought now that I'm off the meds that just waiting it out was the best option?  What about all of the "we will heal" encouragement?

[SkyBlue]

Hi, no, I don't think you're going out of your mind… Although I can understand how it could feel that way. You are in good company here. It's unfortunate and uncomfortable… and you've really been put through the wringer of medicines.

 

I am taking a mindfulness class and we are learning about loving-kindness. I might not be able to fix your 

CNS immediately, but … I am sending you loving-kindness. 

 

Keep in touch and let us know how it's going. 

[Altostrata]

So I tried reinstating just a "chip" of a 25 mg zoloft 4 weeks ago and had a severe adverse reaction.  My symptoms over the past week are getting increasingly more severe to the point where I am having significant difficulty functioning.  I don't know what to do...Remeron was the last med I quit (first week in January) I was only on 3.75 mg so my p-doc told me to just stop.  At this point it is a crap shoot if I will get better or worse?  This topic is scaring me...I thought now that I'm off the meds that just waiting it out was the best option?  What about all of the "we will heal" encouragement?

 

daddyb, I moved your post here because it's impossible to answer without knowing your very complex context.

 

Since you haven't discussed reinstatement of Zoloft before, I gather you decided to experiment with it. In the reinstatement topic, we caution people that it may not work, and it is more likely to work when done immediately, when withdrawal symptoms start.

 

Given your history and sensitivities, I probably would not have suggested it. It sounds like that little bit caused more disruption in your nervous system and possibly your gut (as serotonin reuptake inhibitors affect the serotonin in the gut, essential for digestion, as well). You will have waves and windows until it settles down again as your body works on fixing itself.

[daddybuggaorange]

I am really having a hard time and wondered if anyone has any thoughts.  I've been having numbness/tingling in my legs/feet, vertigo, dizziness, full feeling in my head like a pressure, nausea, weakness, legs buckling, burning sensations in my face, flu like symptoms, racing/skipping heartbeats, stiff/rigid muscles esp. in my neck, widespread pain, skin crawling, chills, and incredible fatigue.  Really not much anxiety and no depression, only a little minor agitation.  Last night I was driving home and felt really tired, got home, ate dinner, then got this really weird euphoric/drunk feeling with some low level agitation.  I went to lay down and felt extremely heavy, like someone had put weights on me.  We had to go to a concert, parked a long ways away and walking to the concert hall I got really dizzy, light headed, nauseated, felt like I was going to pass out and had to sit down.  On Tuesday I was feeling ok and went water skiing...this is how its been all along, no rhyme or reason AT ALL.  One day I'm doing "ok", next I am in pain and can hardly walk.  Been checked out for everything including lyme disease...thyroid, everything is normal.

 

I reinstated Remeron the end of March and wondering if Remeron could be the cause, or is this withdrawal from the slew of other meds I've been on like Zoloft for 14 years.  I've only been on Remeron, nothing else.  Haven't played with supplements or anything since March 2016.  I decided to try reducing Remeron from 15 to 11.25 (can only cut 1/4 tablet) last Friday.  I've noticed a bit of increased anxiety and a little less sleep, and some minor agitation but all of the other symptoms have stayed the same.  I have calls in to my pcp and psyc.

[Christian]

Sorry to hear Daddy. But you might want to post this in your thread so someone can more quickly respond. This is a section for self care and not sure if a mod will catch this as quickly. Hope you feel better!

[scallywag]

dbo: Sad to say that the symptoms you're dealing with are common symptoms after discontinuing psych drugs. Some people notice patterns about when symptoms occur; for others like you symptoms are unpredictable and appear to occur randomly.

 

Your pcp and pdoc are likely to suggest trying another pharmaceutical to add to your current routine or to replace one of your current prescriptions. Adding or replacing drugs when people are having withdrawal symptoms often serves only to destabilize the central nervous system further. It's best to let your CNS catch up to the current drugs and doses. Unfortunately, this means surfing waves of symptoms.

 

It's always worth asking a prescribing doc whether a prescription is a probable solution or just "something to try." If it's the latter, I'd ask

• how likely are interactions with my other medications
• how long will it take before I know it's working,
• what should I do if it's not working
• how will I know it's having a harmful effect,
• what should I do if it's having a harmful effect
• are you (the doctor) going to be available over the next few weeks as I introduce this drug

Then before getting the prescription filled, I would

• read about the drug both the patient information insert and online (FDA, drugs.com, etc.)
• ask a pharmacist the same questions about the drug itself and potential interactions

[Altostrata]

Hello, daddy. Did reinstating Remeron make you feel any better?

 

When did these waves of symptoms start?

 

Please keep daily notes on paper of your symptoms, when you take your drugs, and their dosages. This will help us determine where the symptoms are coming from.

[Yogagirl38]

Hello i am sorry what you ate going through but as soon as i read dyskinesia and CNS i am so glad to find someone that has gotten neurological damage from a medicine like me because it is so rare! I got it from zoloft 50 mg that i was on for 15 years. That has been the only med i have been on other than i would take an occasional advil. I have some form of dyskinesia, BFS, and parkinsonism which is drug induced all these things from zoloft. I am now 20 days off zoloft and sooo much better, i know i beat this drug! I still have neurological issues but am like 80%improved and i hope with time to make a complete recovery. The neurological issues i had while on zoloft: facial grimacing, resting tremor, akathesia, blepharospasm, benign fasiculations, spasms, strange sensations throughout body all the time, hip problems/problrms with walking, balance issues, duodenal lymphocytosis, confusion, mixing up words so i would get really frustrated, the list goes on and on. I hope you feel better soon!

[aries19835]

What my advice personally is if tapering is not working, then try something different. Right be it lesser tapering amounts, or longer tapering periods. Or even some of the people here said try meditation, soothing music, etc. But if all fails and your body is not reacting right and you can't handle the costs or consequences of getting off these meds, then you shouldn't.

[Yogagirl38]

Also i didnt read all this thread because its so long but you need to find a neurologist and therapist that specializes in drug induced movement disorders like tardive dyskinesia because you need to very slowly wean off any medications that can cause this and never take them again probably. Take a probiotic like florastor to help with the duarrhea and see a gastroenterologist. I worked in gastro many years and zoloft can cause lymphocytic colitis but that usually only happens in the elderly. But just your basic diarrhea can be from a medication side effect. I think you need to find a therapist and voice your concerns and get off all these medications but you will need to practice meditation and CBT. Get into yoga or qigong. Yoga is great because the movement disorders for me stopped as long as i kept moving and so yoga would give me relief

[daddybuggaorange]

I am currently on 15 mg of Remeron.  I was put on it to stabilize in March after coming off everything when I crashed hard.  It worked wonders until around Mother's day weekend, from then on everything began to slide backwards, gradually more anxiety, racing heartbeat, panic, depression, fatigue, loss of energy. So 2 weeks ago I was having significant neurological symptoms (numbness/tingling, dizzyness, burning senations in hands and feet, burning sensations in my face, the list could go on) and diagnosed with dysautonomia.  I thought it might be the Remeron.  So I reduced by 1/4 tablet, the smallest I could cut the dissolvable tablets.  I started having issues with sleep, agitation, depression, etc. again but the neurological stuff started to subside.  A week ago Thursday (1 week out of the reduction) I got this drunk euphoric feeling, got really nauseated, felt heavy, heart racing, could hardly walk, and would nearly pass out when I tried walking.  So I got scared, so went back to 15mg.  Its been a week and right now it feels like I'm in all out withdrawal, just like I was in March only not quite as scary.  The neurological symptoms seem to have returned, as well as agitation, anxiety, panic, agitated depression, etc. as well.  Its almost like its not having the good effects but I'm getting all the side effects.

 

I don't know what to do...I feel stuck.  Should I try a slower taper?  does Remeron "poop out" after awhile? I switched pharmacies and got a different brand of Remeron a month ago, could it be a difference between Teva and this other brand? I feel that the neurological symptoms are tied to remeron, but worried some of the more severe psychiatric stuff like suicidal thoughts, agitation, etc. will come back if I try tapering again.  I never dealt with any of these issues before getting put on Klonopin.  NO depression, suicidal thoughts, agitation, etc. 

 

My doctor suggested welbutrin and atarax.  I've had atarax before and it didn't do much, and I'm hesitant to try wellbutrin esp. since it has anxiety and agitation as a side effect. I'm inclined to try cutting by 1/8 tablet and use atarax as needed if the symptoms get severe.

Edited July 22, 2016 by scallywag
moved from Tips for Tapering Remeron topic

[scallywag]

daddybuggaorange, I've moved your post, the one immediately above this one, to your introduction thread from the topic about Remeron.  Because your post is about your individual medications and doses, this is the best location for it.

[scallywag]

It's unfair and awful that your symptoms are the result of well-intended but misguided treatment with pharma "solutions."
 
What's the dosage of the tablets you've got?  15 mg or 7.5 mg?
 
It's possible the switch in generic manufacturers increased existing symptoms or initiated new ones. Other SA members have reported the same experience.
 
You're probably best to hold for a while at your current dose (15 mg) then taper slowly -- 10% or less. You'll have to make a liquid or use a digital scale to do this.

Making a liquid from a tablet or capsules

Using a digital scale to measure doses
 
It would be worth checking for interactions between your current drugs and any that your doctor proposes. There's a major interaction between Wellbutrin (bupropion) and Remeron (mirtazapine). Check that out on the Interactions Checker at drugs[dot]com.  If your doctor has a web-connected device in the office, you could both see the results during an appointment.

[Christian]

Hey Daddy! I hate every minute of being on Remeron. Like you I've been on it since March and it gave me much needed sleep. So then I was plugging along in my WD then all of a sudden my sleep became unrefreshed. I woke up horribly exhausted wether I sleep 4 hours or 8. The fog went to another level. I don't know if it's cause the lexapro reinstatement (that went horrible) left my body or something changed in my WD. It's very scary as each day I decline more I don't know wether to taper off the remeron or just wait it out. Like you its fatigue and exhaustion. To the point of not being able to walk some days. Part of me wants to taper off it to stop the abuse on my brain. But then there will be zero sleep insomnia. I have a sleep study next week to see what's going on. Hang in there. I didn't mean to tie up your thread but wanted you to know Remeron is giving me trouble too I think

[daddybuggaorange]

I tried reducing Remeron 3 weeks ago; 1/4 of 15 mg tablet, smallest I could cut.  The neurological symptoms subsided, but psychological ramped up so I went back to 15. I was really sick after coming off everything the end of march. hand't really slept in months and was in a really bad place so I went back on 15 mg Remeron and steadily improved until Mothers Day weekend, then it has been downhill ever since despite not changing dosage until 3 weeks ago.  I still sleep ok, but multiple rather significant withdrawal type symptoms that are really bad in the morning, ramp up unitl 1pm or so, then generally subside until bed.  Despite going back to 15 mg its not improving again...I feel totally different and its almost like it isn't doing ANYTHING anymore except helping me sleep.  Wild fluctuations with agitation, anxiety, depression, fatigue, flu like symptoms, etc. pretty much identical to what I had back in the end of March.

 

Do I try a slower taper again?  Does re-instating a dose not have the same effect it did prior to reducing?  Has anyone had experience with Remeron "poop out"?  There seem to be reports of it not working after a few months...

 

Also, my psychiatrist wants me to try Wellbutrin.  I took 50mg this morning, THEN checked the drug interaction checker and there is a MAJOR interaction between the two including seizures in those experiencing drug withdrawal and increasing the effects of Remeron.  My doc said not to worry about it, but.

[Altostrata]

Daddy, I moved your posts here, as those questions belong in your Intro topic.

 

We recommend a 10% decrease rather than a 25% decrease. See

 

Why taper by 10% of my dosage?

 

Many people use a liquid to taper so they can measure out 90% of a dose. See

 

How to make a liquid from tablets or capsules

 

Using an oral syringe and other tapering techniques
 

Why does your doctor want you to take Wellbutrin? If you have sleep problems, this could make them worse.