Anon Long road to healing

[anon]

Thanks Alto. I am sorry to hear you also have similar difficulties.

 

I feel like a wimp, but I don't want to try and be stoic anymore.

 

I agree with you that my sensitivity means drugs are not an option for me but I don't know how to bear this suffering anymore, even though I have tried to sit with it and have for a long time.

 

I have not seen a cardiologist but had an ECG done recently and nothing came up. But my heart doesn't feel right. My GP did not refer me to a cardiologist. There is a history of cardiac problems in my family. I could go back and ask her, but I am so wary of specialists especially when they see you have a 'psych' history even tho I do not have a mental illness. That's the problem with labels.

[anon]

My medication is currently 0.75mg Valium and 12.5mg Seroquel. All my meds were reduced or tapered off before or between the Effexor taper.

 

Currently, I get panic attack(s) without fail about 5-6 hours after I take valium.

[mammaP]

Hi Anon, I just read your story and can truly relate to it,

it is very much like my own! I too have been given numerous

drugs with no weaning in between, stop one and start another next day.

Have also been in the same hell for years but am happy to say that

Iam now starting to feel positive again and enjoy the good days.

I also had a good sleep last night so don't despair, if I can feel

this after 20 years then there's hope for you too.

 

I really hope that it isn't very long before you start to feel better.

Hugs, Mamma-p

[Altostrata]

My medication is currently 0.75mg Valium and 12.5mg Seroquel. All my meds were reduced or tapered off before or between the Effexor taper.

 

Currently, I get panic attack(s) without fail about 5-6 hours after I take valium.

 

This is a paradoxical reaction to Valium. I would take it as an indication you need to reduce the dosage. I know this will be hard, I'm sorry. But the panic attacks are renewing the activation in your nervous system every day.

[anon]

Thanks Mamma-p for your encouragement.

 

I started having sleep problems at 8-9 years old due to trauma issues and it got progressively worse with accumulated stress from uni, work, etc, and I went to see a GP who started me on AD. I had an adverse reaction (very impaired judgement) - I became suicidal and ended up in hospital with a massive overdose. It has never cross my mind to be suicidal even in my worse moments prior to AD. I was in a coma and the doctors didn't think I would live but I woke up miraculously and didn't know what hit me. But at the time I had no idea it was due to the AD. Now, off AD I don't have any suicidal thoughts or that level of impulsiveness, but the sleeplessness remains. I agree with Alto about the overstimulated state that I am in. I like to think that things can and will get better, but at this moment I don't know and I can't see the end of the tunnel. The suffering is tearing me apart.

[anon]

Alto, I agree.

[LisasLove]

Thank you all for the friendly welcome.I think what was disappointing was the unwillingness to try and the lack of empathy. I was very ignorant about the effects of the drugs when I started out but if it happened to a friend, I would be curious and interested and would hold my friend in unconditional positive regard. I would not add to their pain by doubting them. I guess I must accept people for who they are and stop wishing the reality to be different.I have done a sleep study test about 3 years ago - it showed less than an hour of very fractured sleep, mostly stage 1 and abit of 2, but no stage 3 or 4 sleep. Do not have sleep apnea. Had also seen a sleep psychologist. Practise sleep hygiene. Have tried acupuncture, herbal meds, shiatsu, acupressure, moving furniture around (!). I also keep a sleep journal to see if there is any pattern.Maybe the body just takes time to heal from 19 years of meds but in the meantime it is quite scary and painful. I look forward to being meds free and not being unwell.

Anon,

When you had your sleep study did they test for Upper Airway Resistance Syndrome (UARS)? Most standard sleep studies will not detect it unless they are specifically looking for it. Follow the links for some basic information and then do your research. http://www.endfatigue.com/articles/Article_uars.html http://cdn.intechopen.com/pdfs/32154/InTech-Upper_airway_resistance_syndrome_a_twenty_five_years_experience.pdf

[anon]

Hello all, I haven't checked in for a while because I was in a mess and ashamed at my lack of progress. But I have been reading your posts, and learning, and finding comfort and validation from your writings. Thank you.

 

I feel vulnerable writing about what a mess I am in. I don't know where it is coming from. Or maybe I do. Maybe it is from a whole lifetime of trying to maintain a façade that everything is under control, that I can fix everything and make things right by putting in more effort. It doesn't work that way with withdrawal. I feel confused, stuck, frustrated and don't know what to do. I hope someone can offer some perspective and advice about how to go forward. Comfort would be good too!

 

Update:

Late 2010 (memory abit hazy) Discontinued Effexor (rapid 2-4 week taper from 75mg - clueless about withdrawal; doctor said it was OK)

9 June 2013 discontinued Seroquel 25mg (approx. 5 month taper)

21 Dec 2013 discontinued Valium 5mg (approx. 11 month taper, many reinstatements)

12 August 2013 restarted Zopiclone 7.5mg (after being off it for 2 years, memory abit hazy) out of desperation but it didn't make much of a difference; currently at 4.6875mg and holding off taper.

16 August 2013 started 2mg prolonged release melatonin (prescribed), stopped 1 Nov 2013, restart 30 Dec 2013 till now

 

I will update my signature soon.

 

Persistent symptom is severe insomnia, still averaging about 14 hours sleep a week, extreme and agonising exhaustion (because it has gone on for so long) with chest pains and palpitations; mostly housebound apart from getting groceries and to the doctor (both with increasing difficulty). I feel like I am going to collapse from exhaustion and die of heart failure. My psych doctor said it is only a feeling. I think it is more than a feeling as I struggle to do the things I need to do. Other withdrawal symptoms, whilst unpleasant, I am managing.

 

I have seen a cardiologist and done the usual stress test and ultrasound but nothing showed up. Having a psych meds record on the referral letter carries fair bit of stigma too.  I believe my exhaustion is causing the chest pains.

 

How long will this insomnia persist? I find it really hard to carry on like this as it has been several years with no end in sight. I can have a perfectly calm, minimal stress day, yet it does not help with the sleep. The only stress I have is from not getting enough sleeping on such a persistent basis. Is it my hormones? Is my CNS permanently damaged? Will I have a life again? If I survive this, I feel I would have been given a second chance at life. To live it well and never take it for granted. 

 

Thank you for reading.

[Petunia]

Hi Anon,

I just read through your thread, I'm sorry you have been going through all this for such a long time.  We both found this site at around the same time, the beginning of 2013.  Like you, I have also had a long psyche drug history.

 

Please don't be hard on yourself for not making 'progress', and don't think anyone here will judge you for it.  There is really very little anyone can do to speed up recovery from these drugs anyway, its more about learning how to survive and keep going, day by day while our body does the work of healing at its own pace.

 

I may be wrong, but from reading back through your thread, I get the impression that you are doing better, that your earlier symptoms have improved and that at the moment you are dealing with lack of sleep and daytime exhaustion.

 

I'm wondering if perhaps some of what you may be experiencing at the moment is related to the zopiclone you are taking, it has some side effects which can arise the following day including disruption of cognition, memory, and driving and psychomotor performance, plus anxiety and restlessness.

Read more: http://www.drugs-forum.com/forum/showwiki.php?title=Zopiclone

 

But I would think much of the way you are feeling is still related to withdrawal issues, when people have been on a lot of meds over a long period of time and have changed around a lot and not tapered properly, it can take some time for the nervous system to repair itself.  I have been off all psyche meds for almost, exactly a year now, and I'm in a very similar place, withdrawal related as you.  Although my sleep has improved now and unless I'm in a wave, I usually get around 5 -6 hours of broken sleep a night. 

 

But you had sleep issues before starting on these drugs:

 

 I started having sleep problems at 8-9 years old due to trauma issues and it got progressively worse with accumulated stress from uni, work, etc, and I went to see a GP who started me on AD.

 

Have you considered having some counseling to work through the trauma issues, perhaps that is the underlying cause of the sleep problems.

 

I also wanted to mention magnesium and fish oil, they both tend to be helpful to a lot of people healing from drug withdrawal:

 

http://survivingantidepressants.org/index.php?/topic/1300-magnesium-natures-calcium-channel-blocker/

 

http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

 

If you do decide to try them, start one at a time and low doses, building up, that way you will know if something doesn't agree with you.  It can be difficult here in Australia to find good supplements at reasonable prices, I get mine shipped from iHerb.com and have never had any problems.  Like you, I'm still finding difficult to get out much, so its nice to be able to have things delivered to my door.

 

I hope you start to feel better soon, and please post if you need some support, that is what we are here for.

 

Petu.

[Altostrata]

Anon, Dr. Rob Purssey will Skype throughout Australia, see http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/page-3#entry47108

 

He may be able to help with the drug prescription and counselling.

[anon]

Thank you, Petu.

 

I see a pdoc every week for therapy. he doesn't believe in protracted withdrawal but I am grateful that he doesn't push meds, leaves me to taper at my pace, and writes the scripts that I need.

 

About three years ago I saw a lovely counsellor at an assault recovery centre for 3-4 months who used a trauma informed approach in her work. It was the first time I encountered this, and it has made a big difference in understanding the effects of early childhood trauma and domestic violence, and being introduced to the concept of self-care. In withdrawal the pent up feelings of grief and anger came pouring out. It was horrible but necessary I guess.

 

I have since worked through the issues and found closure and freedom in many ways.The effects of the legacy, in particular feelings of shame and unworthiness, however, remain a work in progress as I continue to educate myself. I use journaling as a form of self-therapy to process and as a way to consciously develop new life skills.

 

The original issues and stresses that put me into the world of psych drugs are pretty much in the past now so from that angle it surprised me that my sleep is still so dis-regulated. In hindsight I could see the meds worsened my sleep over the years. My gut feeling is the insomnia is now mostly withdrawal related and possibly a paradoxical reaction to Zopiclone. Like with all withdrawal symptoms, stress exacerbates it. 

 

Question: If I am having a paradoxical reaction to Zopiclone, do I need to taper it faster to remove the paradoxical reaction? If so, at what rate? Would I still get withdrawal? I do not want to destabilise my nervous system further when it is still recovering from the cumulative/overlapping effects of Effexor, Seroquel and Valium withdrawals.

 

The main good that has come out of discontinuing Effexor/Seroquel/Valium is:

• mind is clearer
• suicidal feelings/actions have gone (didn't have them pre-meds)
• unexplained excessive weepiness have now stopped
• brain zaps eventually went away
• legs no longer jerking
• involuntary grimacing and bruxism have stopped
• panic attacks have gone
• hair has grown back/thicker and shinier (yay!!!)

I hope the insomnia would ease a bit soon. Fourth night in a row with zero sleep. Head and face feel like it is on fire and my eyes hurt.

 

Thanks for reading my thread.

 

LL a belated thank you for your suggestion re the sleep apnea non-standard test. We don't have it here unfortunately.

[Altostrata]

Yes, lowering the dose of zopliclone will reduce the paradoxical reaction. It needs to be tapered or you will get rebound insomnia.

[anon]

Thanks Alto, saw your response just after I posted.

 

My current pdoc is writing the prescriptions and providing counselling although I wish I can talk to him about my withdrawal experience and what the meds did to me. It would help also if he practised trauma informed care, like my previous counsellor, but I am working around those limitations with my own reading. I am grateful for what he does provide.

 

I am learning a lot from this site, albeit a slow learner. Took a while before I really get it even when I thought I have got it, if this makes sense. Thank you for your patience with me.

 

Thank you also for your generosity and kindness in starting this website and creating this great online community of people sharing their knowledge, wisdom and experience, and encouraging and comforting one another - a godsend when one is confused, isolated and frightened and when there is so little professional help out there. 

[Altostrata]

You're very welcome, anon.

[anon]

Somebody, please help. I don't know how to do this anymore. The akathisia, cortisol surges and anxiety are unrelenting. So utterly exhausted. 4 nights zero sleep, then a few hours one night followed by two zero nights. I am buggered. Stuffed. No second innings for me. 

[Addax]

Anon, I am so sorry you are having to go through this. During the attempted to discontinue Prozac prior to this attempt I experience that horrible feeling of restlessness and discomfort and inability to sit still along this anxiety that felt like it would kill me. I often describe it as feeling like I was losing my mind and that my body was breaking in half.... And that unrelenting fatigue when all I wasn't to do was sleep. Like think, "I just need to lay down for a minute" every 3 minutes... And it didn't start until a few months after my last dose of Prozac. Your post brought those moments back to the forefront of my memory... Again, I wish you weren't experiencing what you are now. What helped me during the worst moments when sleep wouldn't come to me was to rock my body or bounce on one of those exercise balls. I'm sure I looked crazy, and it maybe sounds crazy, but it helped.

 

I ended up having to reinstate some of my meds, but I now know I had tapered much too quickly and have since taken on a snail pace taper. But this is just my personal experience and with a different medication and may not apply to you.

 

I trust that someone more knowledgable will be along shortly. In the meantime have faith that you are not losing your mind and that you will get through this and relief WILL happen. I wish I could be more helpful.

[Altostrata]

anon, how did you react to Seroquel?

 

Dr. Purssey might be able to help.

[anon]

Addax, thank you for responding and sharing your experience. Much appreciated. I feel very alone and scared. If I have several zero sleep nights in a row, I find it harder to cope with the akathisia/cortisol/unexplained anxiety. I can't balance myself well on an exercise ball, but I have found sitting on the coach añd rocking helps sometimes or pacing if there is energy to do that. Prior to the meds and withdrawal, I have never felt this kind of terror or pessimism. Thank you for your support.

 

Alto, Seroquel didn't make me sleepy. I had so many paradoxical and adverse effects from the many drugs and changes I have lost track of which effect came with which drug. I now know Seroquel is an antipsychotic and must have been prescribed off label as I never had psychosis. I did think of going back on a small crumb of Seroquel to see if it will make the withdrawal more tolerable, but I have been off it for almost a year now and it didn't help me when I was on it.

 

I am afraid of contacting any doctors because I  am worried that they would put me on meds and I'll end up in a not-so-merry go-round. I am so frightened of psych meds after my experience with them. My current doctor said he would leave the tapering to me. He is not prescribing any new meds as he said I have tried them all.

 

I use the very sound principles gathered on this website to navigate my way through this ordeal. I know it is not a substitute for medical advice but the collective knowledge and wisdom on this site have been more validating and helpful than I have encountered from any health professional, although I know there are good ones out there if you can find them. I am learning to develop my own self care tool kit to support myself through this. I pray I can survive this.

 

I am only on one med - Zopiclone - at the moment. Reinstated from 4.6875 to 5.625mg on 25 April 2014. I intend to stay on this for at least 4 weeks before considering another drop. This med is causing temperature disregulation. It is nearing winter here, yet  my body feels like it is burning, a sort of dry heat. Zopiclone is not working so it is a bummer that I still need to taper it. I wonder what my sleep is really like when I am off all meds. Maybe I would be able to sleep properly without the meds, even though it might take some time for it to be regulated.

 

I have discontinued the 2mg extended release melatonin as it wasn't helping and in fact might be activating. Should I have tapered it? The med leaflet said to be used for up to 13 weeks only and no mention of tapering. Also, it was extended release so I couldn't have cut up the tablet.

 

Thanks Alto for your response.

[anon]

I just rang Dr P's office. His secretary said he is not taking new clients but she will check with him again since it is a Skype appointment that I am after and will call me back. She recommended another doc at the practice but she does not do Skype appointments so that is out. Even if Dr P takes new clients, there is a complication - I would need a new referral under a mental health plan from my GP which might be a problem because I already had a referral to my current psychiatrist under a mental health plan. I don't think we are allowed two mental health plans. My GP also does not believe in protracted withdrawal.

 

Just thinking out loud, my current psychiatrist is close to home, we do CBT, he lets me determine the pace of my tapering, does not push drugs, and he very kindly charges me a concession rate which makes it possible for me to see him weekly. I don't think I am allowed to see two psychiatrists nor do I want to. I just want advice from Dr P re this whole withdrawal thing but doubt there is anything to reinstate this far out and given that I had paradoxical and adverse reactions to all psych meds. But I am open to his suggestions. If I see Dr P, I would have to stop seeing my current psychiatrist whom I have built up a rapport.

 

I am not sure what to do. Would appreciate comments.

 

Petu, I am ordering some magnesium, fish oil and phosphtidyl serine from iHerbs. Thanks for mentioning iHerb.

[Altostrata]

You might sent Dr. P an e-mail.

 

Your current psychiatrist sounds like a cut above, anyway. I agree, it would be nice to have Dr. P's input, but you are in a relatively good situation without it.

[anon]

Thanks Alto for your comments. Really appreciate that.

 

Things continue to be very difficult.

 

I just rang my doctor to ask if my current medication is causing a paradoxical reaction (more awake after taking it) or if I am still experiencing withdrawals from Effexor/Seroquel/Valium. He said it was unlikely because I had been on my current medication for so long and I have been off the other medications for too long to be still experiencing withdrawals. However, he did say it was also an imponderable question as there are so many factors that can come into play.

 

One suggestion he made was to discontinue the Zopiclone and test the paradoxical/adverse effect theory, and if things worsen, to go back on it. But I am so scared to just go off it. I have been tapering with reinstatements and long holds for over 6 months now for Zopiclone. He mentioned that how we feel about our drugs can affect the outcome we get from the drugs. I have friends who swear by their drugs and can't entertain any possibility that the drugs can harm so it is not something I can talk about with anyone in real life.

 

I know the symptoms I am experiencing and my declining health (on hindsight) while on them is not a figment of my imagination. Most people may not complain about their symptoms to their doctor because they would not suspect the drugs. The suffering that people are going through on this forum should be required reading for all doctors.

 

Questions:

1) Am I still on protracted withdrawal 2 years out for Effexor, 11 months out for Seroquel and 5 months out from Valium? (I think so but just need reassurance because no one in real life believes me. Having to second guess myself is doing my head in)

2) Should I discontinue Zopiclone (4.6875mg at the moment) straight away to test the adverse/paradoxical effect theory as per doctor's suggestion (though he leaves it to me)? I am so afraid to do this. Is it warranted in this situation? I don't know what to think any more.

3) If it is a paradoxical reaction, does it mean that discontinuation will remove the paradoxical reaction (I know I sound stupid asking this but I will ask it anyway because I am thinking in circles and have lost confidence in my addled brain).

 

Thank you for reading. 

[anon]

I took my normal dose tonight and will wait for some advice/comments before changing anything.

 

 

[Altostrata]

Yes, it is possible you are still experiencing post-acute withdrawal syndrome, and have become hypersensitive to zopiclone, as well as other neurologically active substances, as a result of this.

 

Instead of quitting zopiclone, if I were you, I'd reduce it slightly and see if that changes anything. Zopiclone requires tapering just like any other psychiatric drug. Can you reduce it 10%?

[anon]

Thanks Alto.

 

I will order a Jewellers Scale to do the 10% cut. Zop only comes in 7.5mg strength here so a pill cutter is not going to be accurate the lower the dose goes.

 

 

[Altostrata]

You may wish to make a liquid: http://survivingantidepressants.org/index.php?/topic/2693-how-to-make-a-liquid-from-tablets-or-capsules/