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InNeedOfHope: Cymbalta hell - is it impossible for some people?


InNeedOfHope

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InNeed, I had such bad brain zaps and jerking at night that I was always afraid I'd wake up either retarded or a vegetable. However, that hasn't happened and I've recovered from the zaps. I get one now and then and it doesn't scare me anymore. I've read so many success stories and so many people have recovered after all this. I know it's total hell. I don't know if I mentioned that I had an EEG while jerking and zapping and it came out normal. I've had ALOT of bizarre symptoms, especially from my bout with anti-psychotics. A few times I couldn't close my eyes without feeling like everything was moving, and I saw ziggly vivid colored rainbows, looked electrical, along with buzzing in my head. Just crazy stuff. But I am in sound mind and doing fine now. Now whenn I have a zap, I just go "Damn" and then I chillax and go to sleep. It always startles me, but I'm not so afraid of them now.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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Oh, and there was a time that my brain was so messed up that I couldn't post. I just couldn't write, couldn't think straight enough to do it. I felt like my life was totally gone and I'd be an invalid for the rest of my life. But it gets better. Listen to Alto and Barb and the other, they know their stuff. I'm more of an intuitive, spiritual type and they've helped me a lot.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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Sorry for that brief reply earlier.

 

I would never claim to know how you feel, but I have had times when I didn't want to go on living with the pain I had, which has not been the type and intensity that you describe. You've had a hard hit w/the trauma w/your son AND w/these meds. Just one of those is alot. I don't handle stress well and can't imagine what you've been through. You have alot of strength even if you haven't been feeling that way.

 

Benzos (including the Z drugs) have been around for a long time and are much better understood and studied. People take Zs for extended periods (years) even though they're labeled for short term use, so 10 weeks is a relatively short stint. You DC'd in a week and are probably still feeling some effects like rebound insomnia. To have knowledge of what's happening is such an advantage. The quinolone antibiotic may be temporarily exagerating wd reaction and will get better. This group is full of knowledgeable people who understand and will help you through it. They amaze me!

 

You've been taking the meds for just a little over a year and you learned early on that they are not good. Exquisite sensitivity can be a good warning, imho. I knew that the meds weren't helping me but didn't have obvious reactions and kept trying diff ones and cocktails for 18 solid years.

Now you're wondering how I would have anything useful to say, huh? Good question :unsure:

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Not at all, you and everyone else on here have been very very supportive. I must admit I am worried about the Cipro reaction, as I read this can take months and years to subside, I just hope that what I am going through at this moment in time dies down soon. I have been laid on the bed with jerking legs (least of my problems) it is the head pain and the stabbing that is bad at this moment in time. Perhaps I will sleep better tonight as sometimes that can happen after a painful day...just a little relief would be something. Thanks again.

 

Shanti, thanks for the support, I think that it helps people so much to hear the exact symptoms, so they don't feel so alone or unusual. For me, it does not come like a zap that comes and goes. Once it clicks in the feeling does not leave, it just stays. Again, the last time I had that was when I took the extra tablet in February, but it is now here constantly and is getting worse since the Ciprofloxacin. At this moment in time, I don't feel I can recover, but I am hanging in there day by day. This place is a kind of lifeline at the moment.

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

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The other day I was reading someone's blog, it was at http://paxilfree.org/. You just reminded me of him. He was talking about having constant zaps. He's recovered now, the blog was started in 2006. He wrote a diary of his experience.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

Link to comment

Oh, and there was a time that my brain was so messed up that I couldn't post. I just couldn't write, couldn't think straight enough to do it. I felt like my life was totally gone and I'd be an invalid for the rest of my life. But it gets better. Listen to Alto and Barb and the other, they know their stuff. I'm more of an intuitive, spiritual type and they've helped me a lot.

 

I need more of the intuitive part

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Thank you for putting up that blog. I am just reading some of it. I have slept for four hours, the same pattern in there now, four hours then BANG awake. No nice waking gently, no feeling of turning over back to sleep, sleep has left the building. How does someone get better on this when their sleep is so bad, it is self perpetuating. I am pretty sure for me, that this in part is why I feel I am deteriorating. It is these stabbing pains again. Last night was bad, I had no problem getting to sleep, I was exhausted from the pain, but now the daily cycle is going to start again, and I am afraid of what is to come. I don't mean to be. I am afraid that each day is getting worse, I am afraid I will take my tablet a bit late again. I have it set on my phone alarm, think I may need to get some other alarms to feel super safe. Sorry for rambling, I suppose it feels like talking to someone.

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

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Am so confused. I was reading around and I saw a story of someone withdrawing from a similar medicine to me. They had got stuck like me and gone up and down. As they had stalled, they had been advised to keep going with tiny reductions as they had reached tolerance. As the feeling was it was the tolerance causing the problem and not the drop. ARRRRRH what is the right advice what is the right thing to do? How can someone continue to reduce if they can't walk (brings on chest pain and difficulties swallowing food), eat or sleep properly and are just in permanent pain? I KNOW i have gone too fast, deep inside, I know it. So how do I correct this? I have gone too fast from months back. Who is right? How do you know if your pain is tolerance and it is time to move on or to stay the same indefinitely? I am so confused.Am trying not to panic, but failing.

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

Link to comment

Am so confused. I was reading around and I saw a story of someone withdrawing from a similar medicine to me. They had got stuck like me and gone up and down. As they had stalled, they had been advised to keep going with tiny reductions as they had reached tolerance. As the feeling was it was the tolerance causing the problem and not the drop. ARRRRRH what is the right advice what is the right thing to do? How can someone continue to reduce if they can't walk (brings on chest pain and difficulties swallowing food), eat or sleep properly and are just in permanent pain? I KNOW i have gone too fast, deep inside, I know it. So how do I correct this? I have gone too fast from months back. Who is right? How do you know if your pain is tolerance and it is time to move on or to stay the same indefinitely? I am so confused.Am trying not to panic, but failing.

 

The right thing to do is a slow and steady plan. Even if you can't walk or take supplements, your brain still repairs itself. I watched a good documentary about how the brain is miraculous in how it repairs itself. I can't remember the name, but I will try to find it and let you know. Don't worry about the rambling, just keep talking because that is healing too. We're listening and we're here for you. Hang in there.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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InNeed, updosing is not guaranteed to work. As I read your history, haven't you had adverse reactions to these medications from the beginning? I would be hesitant to take a larger dose now.

 

It's your choice, no one knows if updosing will work for you.

 

Yes, your nervous system will recover. It's made of jelly, it gradually reassembles itself in a healthy way. But this can take a long time.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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I was thinking the same thing Alto. If she had these issues at her full dose then it wouldn't make sense to updose. I had symptoms at my full dose too, but they were only the physical. The withdrawals added the full blown mental and emotional issues, so I went ahead and updosed despite the physical symptoms. It all depends on what kind of symptoms I suppose.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

Link to comment
  • Administrator

Some nervous systems just do not get along with these drugs, and should never be exposed to them.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Yes from the early days I have had very strong physical reactions. This is why I am trying my hardest to hang on, but it is getting worse each day. It is three weeks or so since I reduced a third of a gram. If I do any activity at all, even just walking round the house, the next day the chest pain and stabbing increases. But if I do nothing I get stabbing pains too.

 

My head pain and burning I think has gone down a tiny bit, but everything else is worse.

 

For those of you who have had great pain, did it follow a pattern, as in certain symptoms would follow each other.

 

This is a silly question but can someone stop metabolising this stuff or am I just panicking. I am afraid I am going to be stuck in limbo like this and it will go on and on and then I won't be able to reduce the rest as my body won't be able to take the drops. I am sorry to keep asking questions and panicking. The last couple of days I have cried little (yesterday not at all) because I know it makes it worse. So in that sense it is not anxiety increasing the pain. I am trying hard to hang on, but if I continue to decline at this rate I don't know if I can.

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

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I forgot to say, but the time I took the extra tablet and had the paralysis, I bled from my left ear for a while and foul smelling stuff leaked from my ear and also from every pore in my head. The essence of it was on my pillow each morning for a while. I was told I probably had an ear infection and a perforated ear drum. At that time no blame was laid on the tablet but this has later been acknowledged by a neurologist. When I look back and see how fast I have gone in reducing given this incident happened I lose all hope.

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

Link to comment

Hi InNeed. So sorry for this awful awful time you are having. I too have suffered terribly during this process. I am just recovering from a period of having tapered too fast and gotten into a suicidal place. I updosed and felt better within 24 hours--not that that is the best choice for you.

 

I wanted to ask you about your movement issues. You say that you have chest pain and shortness of breath? Could those feelings be mainly anxiety related? If so you will not cause any harm to yourself by moving even though the sensations are very upsetting and uncomfortable.

 

I have had experience both with intense physical anxiety symptoms and actually debilitating physical pain that has some physical basis. I am a dancer, swimmer, and yoga practitioner and so stay very closely connected to my body and its workings. Last winter I had an awful situation going on in my upper back area -- a pain so intense that I couldn't brush my teeth or open a jar b/c of the pain. I was so scared and didn't know what was happening. After going to a number of healers--each of which shed light on it in a different way--I felt assured by my physical therapist that movement was OK and should not be feared.

 

Don't know if this is at all helpful. I hope you find a little bit of relief each day. I am also studying to be a nutrition/health coach if you want any advice on simple dietary changes. I am on a very strict diet myself because of awful Candida that has arisen in the midst of all of this wd.

 

Peace,

Karen

Zoloft:  1997-2010

Effexor:  2010-2011 cross taper to Prozac

Prozac:  2011, 60mg, current 17mg

Ativan:  2005-2006 PRN, 2007 daily, tapered off June-Sept 2011

Mirtazapine:  2010-2012

Lamictal:  2011, 100mg, current 45mg

Klonopin:  Sept 2011- Feb 2012 3mg

Seroquel:  2013, 150mg, current 45mg

 

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InNeed, I think the best thing for you is Homeopathy because it doesn't have any side effects or interactions. Please see a Homeopath or let me help you find some remedies. Rhus Tox is very good for pain. I just discovered this. I'm really glad to find something because the Vicodin wasn't working and I didn't want to increase the dosage. I have had the stabbing pain. Not much but I know what your talking about. First one I had was in the middle of the night and it felt like someone stabbed me in the back. It made my whole body jerk. Every day I do get some stabbing pains but they aren't as bad as that first one.

 

Yes, you are panicking but I can understand. I did the same thing. I had to force myself to never think about the future and stay in the moment. I made a firm decision to always stay in the Now and not worry about my future at all. One moment at a time. I decided "I am in rehab and this is my Now". What helped me accomplish this was affirmations. Repeat them alot and it will train your consciousness to stay in the Now. Your anxiety about the future is only going to aggravate your symptoms. So brainwash yourself with affirmations.

 

Btw, did I ask you if you wanted some free Reiki treatments? My mom is a Reiki Master, very gifted, and offers free Reiki to us on the forum here. She really wants to help.

Edited by Shanti

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

Link to comment
  • Administrator

InNeed, this tendency to go to panic is something you must work to manage.

 

You don't "stop metabolizing" the drug. You are metabolizing it all the time. You are suffering from tapering too fast PLUS the medication caused side effects to begin with.

 

You are truly in a difficult situation, between a rock and a hard place. Going up in dosage doesn't make a whole lot of sense (except maybe going back to 20mg to cancel out that last decrease) and reducing is exacerbating your withdrawal symptoms. I'd hate to suggest you just quit right now.

 

I believe you're a candidate for the Prozac switch.

 

Have you phoned Dr. Healy? If you haven't, you should. He may not answer e-mail.

 

My guess is the pain you're feeling is muscle tension from withdrawal and hyper-reactivity caused by withdrawal with your original pain sensitivity underlying it. You need to do whatever you can to lessen this, even by a little. Have you tried the Epsom salt bath? The magnesium you absorb from it helps relax muscles.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment

Dr Healy has replied to an email the charity who help me sent. All he could suggest was getting the Cymbalta in liquid form, which I don't think will happen as I asked for that once and I was told expense made it out of the question. I am going to get some scales as the beads are different sizes.

 

When I took the extra tablet I got severe stabbing pain in my right kidney and I think all these problems relate to this. It is the left side of my head that feels paralysed (the rest of my head is like a severe headache and tightness with some electrical activity). It is the right side of my body, kidney, lower right back, right bladder, leg and gout type pain in the foot that is affected. That has been there all the way down, but is now unbearable. Do you mean switch to Prozac? What about the fact there is no noradrenaline part to be taken care of? How does that work?

 

At the moment, activity makes the eating tube (sorry can't think of the right name) to constrict so that food will not go down properly and then I get breathing and chest pain and strong palpitations. Sitting around all day brings its own problems as it increases head pain and joint/muscles stabbing. I am pretty sure all of this is from reducing at a high rate plus the Ciprofloxacin. If I can't get functional I don't know how to stop this, then I worry how I will reduce the rest, I now know slower is better (thought from Feb to Nov was not slow) and realise with this medicine in particular I should have gone in 2.5% drops maybe. I have lost hope that I can correct this. Not moving is not good.

 

I have worked out that some of the kidney pain is less if I keep the protein down. I think I ate a little more chicken last night than I usually would have. So have watched that today.

 

My husband is very concerned for me, as he knows I cannot take much more pain, but is afraid for me to go up, in case I just create another set of problems in the future.

 

I think it is a just a matter of time for me as to how long I can hang on. I always had doubts but ultimately hoped I could take the pain and do this. Now I have no hope left. No one could live through this kind of pain.

 

I have some Epsom salts but was afraid to try them, because of my kidney problem.

 

In the first instance it is evil what these drugs do, in the second instance it is criminal that the right advice is not given on how to withdraw safely and successfully.

 

I wish someone could say first you get head zaps, burning, then joint pain, then chest pain and then it goes off, I wish there was a pattern to cling to, but there isn't.

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

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InNeed,

 

I had that early waking BANG after just a few hours of sleep. My heart would be racing for a few hours, it seemed. I thought I might be having night terrors that I didn't remember. Then I read a post by ALto on another blog and realized that it was elevated cortisol levels in a hyperalert state (Alto explains much better!). I had been sleeping w/curtains open wide to allow sun in, thinking that would help, but it was the opposite. The 1st nite I closed the drapes, I slept better and didn;t wake w/the panic. I don't know if you've read that or tried it yet, but it worked wonders for me.

 

Also, I just saw your comment that a neurologist did acknowledge the double dose is involved. What did he advise?

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Thank you, I do sleep in the pitch black. I have found there is a patten now though. If I do too much, or my body is under stress (as it was yesterday from a simple thing like eating too much protein which my kidney is finding hard to process) my heat begins to beat heavy and slow and I can hear it in my head. When this happens (the heart thing) this is when my sleep goes out of the window and I can only manage 4 hours or less. Sleep in the day goes too.

 

The thing is it is hard to judge what is too much for me at the moment,just walking around is too much. I can't get rid of this pattern of poor sleep pain poor sleep etc, and it is dragging me deeper and deeper down both physically and mentally. Can my brain be healing when I am like this?

 

The neurologist said off the record to begin taking out beads to reduce, which I was doing anyway.

 

I am stuck going around in circles but it is getting worse physically. I am scared. I just don't know what to do. If I knew this would change at some point I would hang on, but it is one pace forward, two steps back at the moment. Thank you to anyone who reads this.

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

Link to comment

The neurologist said off the record to begin taking out beads to reduce, which I was doing anyway.

 

InNeed,

 

A neurologist suggested taking beads out?! That's great to hear! I'm not certain, but I don't believe many are aware of tapering techniques that specific. It sounds like he is cognizant of discontinuation problems and techniques to taper slowly. Did he acually say 'off the record'?

 

It will get better. Altho' I had a BANG awakening again at 4:30 this morning. I saw Footloose movie the nite before and the sound was really loud for the empty theatre. Assuming that set me off.

 

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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I know that you're really worried that you won't heal because you can't do anything. But I will tell you that your body will heal. Do you have a juicer? It would be good to make a juice with some bananas, yogurt and walnuts, some flax seeds,raisins, berries, apples, grapes and cherries. These are all super good for the brain. Don't know about the bananas but it seems it would make it taste yummy. Avoid simple carbohydrates. You can make the juice, keep it in the fridge and sip on it throughout the day. Make sure everything is sugar free, like the yogurt.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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  • Administrator

InNeed, did you or CITA ask Dr. Healy for referral to a doctor nearer you?

 

Someone who knows how to switch you to Prozac?

 

I'm not sure if weighing the individual beads will work. I suspect the noradrenergic component of Cymbalta may be causing you a lot of problems.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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I hope I can heal.When it is really bad it seems like an impossible mountain to climb. That sounds gorgeous. Problem is even if I have natural sugar in fruit the kidney infection and pain comes back. Maybe this will change at some point when I stabilise. Try to have complex carbs to regulate blood sugar though.

 

The neurologist I saw had not heard of withdrawal problems, though he did listen with an open mind. He said there was no way it was Bells Palsy and that I would not have got my hearing back so soon. He asked how I would get from 20mg to zero. He said the only answer he could see would be opening the capsules but said this opinion was "off the record". What are they all so scared of? Why is it such a bad thing to admit there is a problem with these drugs for some people?

 

Probably most of the population as they get bounced from one drug to the next as that one wasn't 'right' for them. This whole thing is a ticking time bomb.

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

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  • Administrator

It's true, it's a time bomb, and it's going off every day. You can see it in the new people who come to the site.

 

Few doctors know anything about withdrawal syndrome, although there are several hundred journal articles about it. The drug companies have convinced them the drugs are safe and there are few drawbacks, so doctors don't bother to educate themselves about tapering.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment

The neurologist I saw had not heard of withdrawal problems, though he did listen with an open mind. He said there was no way it was Bells Palsy and that I would not have got my hearing back so soon. He asked how I would get from 20mg to zero. He said the only answer he could see would be opening the capsules but said this opinion was "off the record". What are they all so scared of? Why is it such a bad thing to admit there is a problem with these drugs for some people?

Probably most of the population as they get bounced from one drug to the next as that one wasn't 'right' for them. This whole thing is a ticking time bomb.

 

Kudos for making this neurologist aware of discontinuation problems, esp after being on Cymbalta for a short time! You may not realize how valuable it is for them to see an actual case of Discontinuation Syndrome and severe adverse event from a med that is perceived to be relatively safe. To hear he was receptive and even thought to open the capsules is HOPE! Is he aware of the severe pain issues you have? Neuropathic pain, headache, migraine, neuralgias are the domain of Neurology, He may be a good one to understand (or attempt to understand) what is going on. Did you see him in a hospital or outpatient setting? I would try to see him again if at all possible.

One open mind is worth more than a million closed minds!

 

Yes, it is a complex problem.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment

I saw him as an outpatient. I went through my story, and he said no way. I take people on and off of this all the time. He was surprised at my level of knowledge and checked me I think for some other syndrome (is it neuroleptic not sure), he said my reflexes were extremely heightened. We discussed how I had been on the Zopiclone for 10 weeks (even though I had protested to the doctor about addiction, I took myself off them too quickly as I was sure they were the reason for my 2 hours of sleep and paranoia, yep they were) and he said he has a sleep clinic and would NEVER prescribe them for that length as it is dangerous. I didn't understand this, how could he..an expert say this, but it was ok for my doctor to just keep handing them out. Surely one of them was wrong? I know which one, but why is no one accountable for that, as that is what led to Cymbalta.

 

After the examination, he said "I owe you an apology, it may be rare but I do think you are having an adverse response to the medicine, it's just I have not seen it before, I'm sorry". He is the only doctor who has ever apologised to me.

 

He said to gradually reduce and suggested taking antihistamines like Benedryl. I had brought that up and he said yes, he could see how that could work and proceeded to explain why. Never was brave enough to try that. He said he would keep an eye out in journals for anything and I could see him again if I was struggling. I have never gone back as I feel it is the blind leading the blind. They can take a risk and try a different med or a different approach but I can't take that risk. I am a living breathing person, not an experiment.

 

I am due to see a pain doctor tomorrow. They are giving me a TENS machine (not sure about that think I have enough electric shocks as it is) and are going to discuss cold laser treatmet (whatever that is). I doubt I will try it as nothing seems to work the same for us as for someone not on AD. Does anyone know what cold laser treatment is?

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

Link to comment

I saw him as an outpatient. I went through my story, and he said no way. I take people on and off of this all the time. He was surprised at my level of knowledge and checked me I think for some other syndrome (is it neuroleptic not sure), he said my reflexes were extremely heightened. We discussed how I had been on the Zopiclone for 10 weeks (even though I had protested to the doctor about addiction, I took myself off them too quickly as I was sure they were the reason for my 2 hours of sleep and paranoia, yep they were) and he said he has a sleep clinic and would NEVER prescribe them for that length as it is dangerous. I didn't understand this, how could he..an expert say this, but it was ok for my doctor to just keep handing them out. Surely one of them was wrong? I know which one, but why is no one accountable for that, as that is what led to Cymbalta.

 

After the examination, he said "I owe you an apology, it may be rare but I do think you are having an adverse response to the medicine, it's just I have not seen it before, I'm sorry". He is the only doctor who has ever apologised to me.

 

He said to gradually reduce and suggested taking antihistamines like Benedryl. I had brought that up and he said yes, he could see how that could work and proceeded to explain why. Never was brave enough to try that. He said he would keep an eye out in journals for anything and I could see him again if I was struggling. I have never gone back as I feel it is the blind leading the blind. They can take a risk and try a different med or a different approach but I can't take that risk. I am a living breathing person, not an experiment.

 

I am due to see a pain doctor tomorrow. They are giving me a TENS machine (not sure about that think I have enough electric shocks as it is) and are going to discuss cold laser treatmet (whatever that is). I doubt I will try it as nothing seems to work the same for us as for someone not on AD. Does anyone know what cold laser treatment is?

 

That's an amazing story! Do tell what info you had that caused him to reconsider his opinion.

Interesting that he's a sleep specialist. Someone else found a sleep specialist who helped after the several psychiatrists didn't. I wonder if there's something about sleep medicine that draws (or creates) an open mind.

Thanks, InNeed. You gave ME hope!

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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All I did was produce some accounts of other people's struggles on the internet. I then said what happened when I went from 60mg to 30mg and what happened when I went back up. I think that is when he began to appreciate how powerful these medicines can be in some individuals.

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

Link to comment

As bad as I feel, today I was dropped off at the hairdressers, as my husband thought it would cheer me up and to be honest my hair is a mess as I have to cover grey.

 

A few months ago I noticed increased pain when I went so I changed the way I had it done to just foils, so little dye came into contact with my head, they just put a tiny bit on my parting.

 

Today, something new happened. Within 30 mins I felt really intense burning and head pain, so they rushed to get it off immediately. I now have some head pain and burning left over, but my chest pain and breathing issues have intensified now this evening as I write, which is making me feel panic rising that I am trying to fight.

 

Am I now allergic to dye?. Has anyone else had this? Will it go away? Or have I now a permanent allergic reaction that will go worse with future applications? I don't know what to do in future (re colour which I am sure sounds very vain, but I don't want to be grey at 41) and I don't know how to get better when stupid things like this keep happening and setting me back. I am tired of the pain and at times the hopelessness of the struggle. I am scared of everything I eat/come into contact with. Is this symptom something anyone else has come across?

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

Link to comment
  • Administrator

Clearly, you had a bad reaction. If it was due to withdrawal hypersensitivity, eventually you will be able to tolerate the dye.

 

Don't use it until you feel a lot better.

 

There are vegetable dyes you can do at home that may be more tolerable. (If you like bright colors like pink or purple, you might try Manic Panic.) Or, you may just have to accept being a bit gray for a while.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment

I believe this is a fairly documented reaction to hair dyes in general. As Alto said, it may have surfaced w/WD. There are natural color products that a hair products store or professional colorist could point you to. I'm not certain what ingredient is the offender.

It's probably safer to use the newer products anyway. A friend's husband recently had a reaction, no meds involved.

 

Check out henna products and always do an allergy skin test.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment

I'll look into it. It started a few months ago with a bit of pain, but only now at lower doses have I had this reaction. I think it is to something called PPD in it. Will have a look at some of the more natural products to see if they will work. Hope this reaction doesn't take too long to die down.

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

Link to comment

If you try henna dye, be sure to do a test strand. Henna is known to have inconsistent results. The problem with it is that it binds to the hair and doesn't come off like regular hair dye. If you have to go to a salon to have it removed, tell them it's Henna as they'd have to use a fruit based lifter.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

Link to comment
  • Administrator

True, henna over commercial dye can be unpredictable. I used henna for years. It is very sloppy. Few salons will apply it.

 

I would go the veggie dye DIY route, like Herbatint. You can put that over commercial color.

 

I had a great time with purple Manic Panic on my roots as I was growing my henna out. Manic Panic is very easy to apply.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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I just keep getting problem after problem. Still waiting for hair dye pain in head to subside, but on top of the usual I have had a general feeling of being unwell (normal unwell). I have woken up and my chest feels tight and breathing hard and I have a bit of a cough. I have that smarting feeling behind the eyes and forehead and feel warm(though no temperature, I never have a temperature with infection these days, is that the same for others?)

 

I have slept in the night and just slept two hours this morning (which is just not like me at the moment). I am scared I have an infection coming and that means antibiotics which I just can't do again after last time. I don't even know how they deem antibiotics necessary for something like this, is there a test? My body is taking such a bashing I am never going to get through this, it is one thing after another.

 

I have also heard today that a good friend of mine, who is fighting melanoma has had some bad news. I can't bear it for anything to happen to her. I sometimes think that antibiotics, x rays, scans etc all contribute to this mass increase in cancers etc and I think what is the point.

 

After this last year I too have probably set myself up for later health problems.

 

This century cancers, heart disease and other illnesses have rocketed. It is all put down to unhealthy diet and stress in society, which may be true in part. Yet, how much of interfering modern medicines and radiation and pollution has contributed to this increase?

 

I am just negative, negative, negative. I just can't seem to turn a corner and see any improvement that makes me think I can do this. I am incapacitated and dependent much of the day and there seems to be no sign of that changing. I wish I could follow all the advice out there, to be positive and meditate and be kind to yourself, but it is so so hard when you are in so much pain.

Sept 2010 - Citalopram 1 day

Sept 2010 - Zopliclone for ten weeks (paranoia ended a couple of months after coming off this and sleep settled down again until the last couple of months)

Ocober 2010 - Cymbalta 30mg

November 2010 - Cymbalta 60mg

February 2011 - 60mg to 30 mg (lasted 10 days)reinstated 60mg

March 2011 - Took 2 60mg tablets on one evening in error - paralysis of face, back of head, shoulder, stabbing in right kidney, lost 30% of hearing)

March - June 2011 went down quickly 1mg a day until I got stuck at 25mg, went up to 27mg, because couldn't breath.

26th June - 26mg

3rd July - 25mg

17th July - 24mg

24th July - 23mg

7th Aug - began reducing by a bead every couple of days or so went well at first then hit a wall

24th October - now on 18.5mg. Since the kidney infection at start of September, have been in constant pain and anxiety, no let up. Given Ciprofloxacin.

8th Jan 2012 17.8mg (currently reducing 0.2mg a week)

8th Jan 2012 17.6mg last reduction was 6 days ago.

15th Jan 17.4mg

21st Jan 17.2mg

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