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Spiraling Out Of Control


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#1 WhereHaveIGone

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Posted 24 June 2017 - 08:51 AM

I don't know where to start, so I will start at the end and work backwards from there. Today marks day 5 of being off cymbalta and I don't know how to deal with the withdrawal and the strain it is causing on my relationship with my boyfriend and my family. My family Dr had put me on amitriptyline about a month ago while I was still on cymbalta. My side effects were out of this world crazy and my Dr decided it was time for me to come off the cymbalta while increasing my amitriptyline. I just read an article that says these two medications should not be used together because the risks outweigh the benefits. I am 35 years old and I have had multiple surgeries for removal of endometriosis and the separation of organs that had fused together. I suffer from fibromyalgia, chronic pelvic pain, chronic pain through my body, raynauds and damage to my spine in different areas. Depression and pain had taken over my life when my Dr prescribed cymbalta, when it didn't help enough with the pain or depression other medications were added to try and help. Believing that my family Dr and my pharmacist knew which combination of drugs were safe, I took them without doing my research. So here I am, day 5 no cymbalta, still taking the amitriptyline. I sit here in a foggy mess, headaches flaring up, hot flashes into cold sweats, anxiety through the roof, pains flaring up in my body and absolutely no control over my emotions. I am up and down like a roller coaster, I can go from happy to sad to angry in moments. I am angry for having good moments and not being able to make them last. I get upset and fall into fits of crying because I feel like a failure as a mother, daughter and girlfriend. I don't feel like me anymore. I feel like I am walking around in a dream (more like a nightmare) where I am able to see the world going on around me, but I am unable to interact the way I want or need to. My heart breaks to see the hurt and the pain that I am causing my family. I keep them away to protect them from my outbursts of anger and frustration, but no one understands why I feel the need to distance myself. I just want to feel like me again. I don't want my boyfriend to have to tread on eggshells around me or for my two teenage daughters to have to be strong for me. That is my job. I am supposed to be strong for my family,and right now I am lucky if I can find the strength to put on a fake smile and say I'm fine, even though I'm not.....

#2 brzghoff

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Posted 24 June 2017 - 10:43 AM

WhereHaveIGone (can i call you WHIG?),

 

welcome! it sounds like you are living a nightmare - albeit a very common one these days. i am so sorry that you are suffering due to the bad decisions of others in whom you put your trust. what you are going through is unfortunate but very normal. your story has been told on this forum many times, for the same reason, a family doctor - who has no business doing so - prescribes a very powerful psychiatric drug based on literature they got from a pharmaceutical company. although to be fair, many psychiatrists put little thought into it either. they hear about how its also used as a pain med and since you're suffering from depression - likely due to the pain - they figure they've found the perfect drug to treat two things at once. anti depressants that also treat pain - usually the SSRI/SNRI's but also the older tricyclics to some degree - have become the opioids of mental health treatment. for many - make that most - there are alternatives.

 

how long were you on cymbalta? it sounds like you went cold turkey due to the issues with the amitriptyline. what was the cymbalta dose you were taking when you stopped? your best bet is to get back on and wean your way off through "bead counting" . the length of time you were taking the C will define to some degree the length of the wean/taper necessary. i was on cymbalta for ten years and went cold turkey three years ago. the first year was hell - i was not working at the time and would have had to quit if i had been. my marriage of over 20 years was nearly destroyed. the second year was much better - i was able to be employed for five months, but i was still not anywhere near normal. the third year i am once again employed full time and no longer concerned about the concept of normal. you can avoid much of that by getting back on your dosage and tapering down slowly. if you choose to "stick it out" cold turkey you are at great risk of causing long term suffering - anxiety, pain, suicidal thoughts and worse. i also highly recommend seeing a therapist who specializes in cognitive behavioral therapy - and visit on as regular basis as much as you can possibly afford - like once a week. that combined with a conservative tapering schedule can be the difference between self destruction and preserving the relationships with those you love. i won't say there will be no struggle - because there will - but the idea is to minimize suffering and avoid permanent or long term damage.

 

i searched for the best tapering schedule but i am not on the boards much these days and while there is a lot of info, i can't find the specific post i was looking for to help you get started. we have other members who are here quite regularly and will hopefully jump in and will know where to point you. it is a weekend and activity can be slower.

 

for your general information about what bead counting is:

 

rule of thumb is a 5% reduction per week. chances are your doctor has never heard such a thing. even eli lilly now admit you must taper very slowly and none of the "every other day" type of taper. that's not a taper, it just jerks you in and out of cold turkey. while eli lilly recommends a slow taper they provide no instructions on how whatsoever. the general procedure based on the trial and error of thousands of sufferers like you is to open your caps, pour out the beads and count them. depending on if you have the brand-name, or a generic, the # will vary. could be as many as 300 depending on brand and capsule dose (60mg/30/20). once you know how many, determine what makes up a 5% reduction of your daily dosage. set those aside and put the remaining beads back in the capsule and take that. do the same thing every day for a week, the try stepping down another 5%. (acquire some empty gel caps that you can use to store remaining beads for when you need the much smaller doses - no wasting needed!)

 

its means doing the math and it helps to have some special tools and counting strategies as described by others on this board. check out the threads in the "Weaning off Cymbalta" forum, scroll down through the many topics to see which once contain the tips on both the dosing schedules and the mechanical aspects of putting together your doses/caps.

 

also you said : I am supposed to be strong for my family,and right now I am lucky if I can find the strength to put on a fake smile and say I'm fine, even though I'm not.....

 

actually - you are not supposed to be strong for your family - or "supposed" to be anything at all. however it is everyone's best interest that you be present for them and be a functioning, contributing member of that family as best you can. you are ill. step one is to take care of YOU! otherwise you won't be there for them. its the old worn-out cliche that applies here. in an airplane emergency, you must put on your own oxygen mask before you can assist your child with theirs.

 

again, others will hopefully join in before too long who will be able to address what must be the many more questions you now have!

 

with much care,

 

brz...


#3 WhereHaveIGone

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Posted 24 June 2017 - 11:54 AM

Thank you brz, and yes you can call me Whig for sure. I started on cymbalta in December that just passed. My Dr quickly increased my dose from nothing to 4 a day and then down to three because he thought 4 was too much. This was all while he tried me on multiple different medications that were supposed to interact well with the cymbalta. After months of intense depression and pain, and NO support from my family Dr for my emotional state, I found a new family Dr. My new family Dr left me on the cymbalta that I was still on at the time, and then added in the amitriptyline because I was having problems sleeping, my pains were still very prominent and my emotional state was a frightful mess. Every day chores became a tedious task. After adding the amitriptyline my sleeping was much better and my ability to move around somewhat normal had improved, minus of course the instability and shaking that the interactions of both medications caused, along with countless other side effects. After strongly expressing my desire to be off of pill form medication, my family Dr decided to take me off of the cymbalta. My decrease started 3 weeks ago this upcoming Tuesday. I was on 90mg a day, all taken at 5 am in the morning when I woke up to start my day. Day one of decrease, the day after I saw my Dr I went from 3 pills to 2 a day. 7 days later 2 pills down to 1 and 7 days after that no pills at all. I have been off the pills now for 5 full days. I have insane lightning bolt headaches and shots of pain that radiate throughout my body. Problem is, I don't know if it is part of the withdrawal or if it is my fibromyalgia flaring up. With my endometriosis and issues with organs sticking to one another and needing to be surgically separated I always have some form of pain in my lower abdomen. I also don't know if this "dream" like state that I feel I am in is because of withdrawal or because of what they call "fibro fog" for people with fibromyalgia. Sometimes I can't tell if my dream was a dream or reality, and vise versa. I find myself spiraling out of control all too often. Becoming overwhelmed with anger, frustration and anxiety. Never knowing if I am going to laugh or cry, or cry because I laughed and all of a sudden I feel guilty for not being able to be happy all the time. I don't feel like me anymore. I haven't since this whole thing started. I have lost myself, my passion and my ability to live each day to its fullest. I have grown to hate myself because of all the pain I am causing the people I love. The hardest thing in the world for me, is seeing the hurt in their eyes, it doesn't just break my heart, it feels like I lose a little more of myself with each bolt of pain I cause them. Every tear that I have caused.... Am I not strong enough to overcome this? How does 1 pill have so much power over ones ability to function and live a normal life?! I wish I had known how negatively this DRUG would affect my life before I put it into my body. Lesson learned! I have never felt so lost and alone, angry and frightened, ashamed and let down in all of my life. I am caught in a vicious circle of medications and their side effects. Depression brought on by pain and the inability to live my life the way I used to, a dark pit of sorrow and sadness because I have lost the woman I was, and I am terrified I will never be her again. Hence the name WhereHaveIGone.

#4 brzghoff

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Posted 24 June 2017 - 05:25 PM

Whig,

 

you have nothing to feel ashamed about! the woman you"lost" is still in there - it will take some work to "dig her out" ;-) this is not your fault. i don't doubt its difficult for your boyfriend and kids - but i hope he understands that you need support. your daughters are teens? i know its hard to explain but they are certainly old enough to understand.

 

the fact that you've only been on the C for a short time is very good news and speaks well for your ability to recover - however, cold turkey is harmful - not only the pain and suffering you feel now but there are potential long term risks as well.

 

i am hoping our wisest of the wise forum members, fishinghat, will be able to stop in within the next day or so.  he has a master's degree in physiology (or something close to that) and really knows his stuff. no he is not a doctor, and we all advise consulting a physician but its been well documented there are few who have a clue when it comes to withdrawal - like my original psychiatrist - and like your family doctor - no matter how well meaning they are. the doctors weren't trained on it because the drug companies never thought withdrawal would be in the picture. they never meant for us to go off their drugs. many of us were told the drugs are meant to be taken for life. however, there are more and more of us on the forum who have found doctors who do understand and are willing to develop a partnership with their patients to insure a healthy outcome rather than take the my way or the highway approach.

 

while i can't relate to the endometriosis, i can understand the mental anguish. it feels surreal and its scary. fear, anxiety, panic, depersonalization, heart palpitations, dizziness, the list goes on. and then there's the physical, from severe gastrointestinal issues (i went from 140 lbs to 115 lbs in three months. i'm 5'4") to the pain, brain zaps, tinnitus and more. it doesn't mean you'll develop all those withdrawal symptoms but they are possible. your doctor has put you into deep cold turkey withdrawal. from 90 mgs to 0 in three weeks is outrageous - even though you were on the C for only 5 months or so. with all due respect, he had no idea what he was doing. i would like to suggest that you go back onto 30 mg a day and get stabilized, it will take a week or so - but you should feel some relief within 24-48 hours. from there you can start a bead-counting regimen after you've "stabilized". chances are your doctor will tell you to stay off the internet and its not withdrawal an he's never heard of it. do not let him tell you its not the withdrawal that's put you where you are. while you do have multiple issues - what you are feeling is the cymbalta withdrawal. everyone on this forum has experienced much of what you describe to one degree or the other. please take the time to review the posts of those who've told their stories here. you are NOT alone!

 

much of the additional physical pain you are feeling is part of it also. i dont' doubt you'd need something else anyway - but withdrawal makes it worse than normal. those of us who took cymbalta for mental health/depression felt pain coming off it. for those of us who went cold turkey it was terrible. for me it was like i had temporary fibro for 6 months. i never had fibro - i was an extremely healthy and physically active person. all over body aches - muscle and joint pain and stiffness. it seriously aggravated my arthritis in my hands. for those who've taken cymbalta for physical pain - not mental health - and tapered too fast or went cold turkey, many plunged into deep depression and developed severe anxiety in withdrawal. people who were mentally healthy going in developed mental illness coming off (temporarily)! i recommend behavioral therapy for anyone withdrawing from any of these drugs even if they were prescribed them for pain. withdrawal induced anxiety can develop into a generalized anxiety disorder if not nipped in the bud. that's what happened to me. i was prescribed the C for depression, but i had never felt anxiety until i went cold turkey - and that was from dropping off 30 mgs in three weeks. after 8 years on the C i went from 90 to 60 and felt little discomfort - a year later i went from 60 to 30 with little discomfort - but the last drop was what did me in. 3 years later and i am finally tapering off the only other 'scrip i take at all - lamotrigine (mood stabilizer). but i am doing it right this time. its taken me 3 months to cut my dose in half and it will probably be another 4-5 months before i'm done. my doctor is working with me, is willing to let me drive and is comfortable writing whatever dosage i need to taper at my own pace.

 

please step back up to 30 mg, stabilize and work down. its a lonely place here on the weekends sometimes but hopefully we'll hear from some bead counters very soon


#5 fishinghat

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Posted 24 June 2017 - 08:02 PM

Brz  That person is still inside and with time, a lot of time and patience you will rediscover yourself.


#6 blanam

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Posted 30 June 2017 - 04:48 PM

Hello WHIG:

 

You are not alone.  For the past 7 weeks I have experienced the same thing.  One of the most distressing is not recognizing yourself any more.  It's called depersonalization.  I would open my mouth and wonder "who is that person?".  I was completely hopeless until a few days ago.  I have 14 beads left before I'm off, and I'm tapering by 1 bead every two weeks.  A few days ago I started to add L-Tyrosine to my long list of supplements.  I don't know if it was the Tyrosine, or if I had reached a point of adjustment, or both, but I actually caught a glimpse of myself for the first time in 7 weeks.  It has been a nightmare!  But each day now I've felt better and the symptoms are abating.

 

My advise, go slow, real slow.  Get enough sleep, eat healthy, and exercise.  I didn't think I would ever recover, and now I see a light at the end of the tunnel.  I am so grateful to have hope.

 

Hang in there and things will get better.





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