Anon Long road to healing

[anon]

Hello I joined this board because I feel very much on my own in my journey to heal. I want to be ultimately free of the meds that did not help but harmed me instead and worsened the original problem(s). It grieves me when I think of the harm that has been done but my focus is on educating myself and doing whatever it takes to heal. I no longer trust professionals as naively as I did before and I am learning to honor my instincts as I listen to my body and learning to take care of it.

 

My most distressing symptom is the prolonged severe insomnia that I am experiencing - 0-3 hours over a 24 hour hour period, averaging 8-14 hours a week. This has been going on for over 6 years now. I am getting frequent chest pains and feel that I am going mad on some days even though I try to be as calm and patient as I can, but it is agonizing. The continued sleep deprivation has taken its toll even though my sleep has improved from 5 hours/week to the current 8-14 hours.

 

I am largely housebound now, going out only when I need to get food. Even medical/dental appointments are put off to as long as I can. I am constantly exhausted yet my body feels 'pumped up' like I am on steroids instead of feeling sleepy. My meds have never worked. It gave me paradoxical effects and the side effects were very debilitating.

 

I have put my taper of valium and seroquel on hold for the moment because of the stress from my sleep deprivation. I am minimising stress, eating as healthily as I can, trying meditation, but can no longer swim or go for walks. I have worked through my trauma issues and they no longer impact me apart from feeling sad briefly when memories are triggered.

 

What is very stressful for me is what I am going through is not being believed. It makes me withdraw from people because solitude is less stressful even though it would mean so much to have emotional support from people who believe in you. I try not to let it get to me but the reality is it does get to me especially on difficult days and my resilient is low.

 

Sorry for the long post when it is supposed to be just an introduction. I needed to get this off my chest because not being believed and the lack of empathy are distressing for me in this lonely journey to heal. It has been weighing me down. I am so glad to have stumbled on some excellent blogs. This is all relatively new to me.

Edited May 1, 2014 by Petu
fixed text

[Meimeiquest]

Welcome Anon,

 

So glad you've joined this little band....we surely believe you! Have you considered a sleep study? It was life-changing for me. The experts can discuss your Effexor. So very, very sorry the journey is so hard and lonely...glad to have you hang with us! Best. Meimeiquest

[FeelingAlone]

Hello Anon,

 

Glad you found this website. It has helped me tremendously in my journey to be "normal" again. You'll find tons of support and friends here. On my darkest days, the people here have held my hand and guided me thru it.

 

FA

[tezza]

Hello Anon,

 

Wow, you have a long list of drugs. I'm so sorry for all you've been through. We believe you, here. I can relate to having people who don't believe, I've experienced it as well. I think the reason they don't believe is simply due to ignorance of withdrawal. Most people are very ignorant (unlearned) about these drugs period. I must admit that I was!

 

Thank you for adding your signature, that is very helpful.

 

You will find everyone supportive and friendly, here. I'm so glad you've joined us!

 

Tezza

[anon]

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.

[Meimeiquest]

Wow! No wonder you're exhausted!

[basildev]

Welcome, Anon.

 

I too am experiencing insomnia, but compared to you my situation is a walk in the park.

 

I will never complain about the amount of sleep I get again after reading your story.

 

Yes, we all believe you because most (if not all) of us have experienced withdrawal ourselves.

 

You are part of a community that cares very much about what you are going through.

 

I wish you all the best.

[Altostrata]

Welcome, Anon.

 

How much Valium and Seroquel are you taking? When time do you take them? What is your daily symptom pattern?

[Edted]

Dear Anon:

I have seen many people remark about insomnia after coming off Seroquel. It is a strong antihistamine and it may be (please wait for someone more knowledgeable to comment) that an over the counter antihistamine like Benadryl may be a short term solution. Lack of sleep is a very serious problem even for those not dealing with other med caused symptoms. The folks here have gathered a great deal of information. Hang in there, buddy. There are answers.

Ed

[Altostrata]

Many people find Benedryl or a generic to work for withdrawal insomnia. I found half a tablet worked fine. Occasional use is better as in time, the effect wears off and goes paradoxical -- keeps you awake.

[anon]

Hello Alto Strata

 

I have tapered to Valium 1mg, Seroquel 12.5mg but have not made any progress for 5 months. I am doing the tapering on my own.

 

Seroquel was prescribed off-label for sleep but it never helped all these years. I get paradoxical effects from both Valium and Seroquel. Once when I was given 20mg Valium at an emergency department, within minutes I couldn't stop pacing.

 

I was very sensitive to anti-depressants. It made me very hyper. I have gone off Effexor but wonder if I am still withdrawing.

 

Daily symptoms: acute anxiety, panic attacks, racing mind, agitation, restlessness, excitability, inability to sleep, chest pains, numbness in hands and feet, very sensitive to noise, can't bear to listen to music, aches, muscle stiffness, exhaustion, disorientation, difficulty with arithmetic, memory problems, feeling overwhelmed, difficulty concentrating.

[anon]

Alto Strata, I take Valium and Seroquel at about 7pm. I have tried taking it a bit earlier or a bit later, but no difference.

[Altostrata]

Do your symptoms vary according to the time of day? Does the anxiety have any daily pattern?

[anon]

Anxiety and panic attacks tend to occur at night but can happen during the day as well, the rest of the symptoms throughout the day. Stress worsens the symptoms. Easily overstimulated.

[Altostrata]

I am wondering if they aren't paradoxical effects from the Valium with rebound at half-life stages.

[anon]

I think it is distinctly possible. I feel trapped. I am so afraid to taper off the 1mg of Valium in my current sleepless state even though it doesn't help me with my sleep. Was hoping to get 2-3 hours consistent per night for a couple of weeks, to give myself a bit of resilience, then taper to 0.75 mg until I feel ready for another taper. I have been waiting for over 5 months now but I just can't get the 2-3 hours consistent sleep yet. I will keep minimising stress and stimulation, and doing all the healthy things, etc to maximise the chance of this happening.

 

Thank you Altostrata for trying to work out what's going on. I went to see a neurologist to get his opinion about whether the drugs had affected me neurologically. He said it was too messy to unravel. An expensive consultation for naught. It is so hard to get professional help. Back to relying on self and groups like this.

[Altostrata]

Are you anywhere near this doctor http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/page__view__findpost__p__47108

 

I'm not a benzo tapering expert, but I would try reducing the Valium by 10% to see if symptoms ease. If they do, you know you're going in the right direction.

[anon]

I think a 10% taper is probably more prudent, but how do I get a 2mg tablet down to 0.9mg? At the moment I am breaking the tablet in half to get to 1mg. Will it work if I use a knife and scrape a bit off?

 

Unfortunately the doctor is in another state.

[Altostrata]

See http://survivingantidepressants.org/index.php?/forum/29-members-only-benzo-tapering-discussion/

[Gem]

Dear Anon,

 

So sorry for your suffering. It is so very hard and incredibly frustrating not to be believed, I can relate. People in withdrawal certainly deserve validation and empathy. I believe you and have had a lot of the symptoms that you describe.

 

I very much hope you have some relief by reducing the Valium. Wishing you lots of healing xxx

[Altostrata]

You might contact Dr. Purssey to see if he can recommend any colleagues nearer to you.

[anon]

I had a look at Dr Purssey's website. Have some good resources there. I will keep him in mind to contact for possible referrals to his colleagues who practise where I live if I need it. At the moment I don't feel I want to see any mental health professional because I am quite housebound and still recovering from the trauma I experienced in the mental health system. Even though things are hard, I feel I am in a better place after taking back my power and exiting the system a few months ago. I am now healing the body broken by the drugs.

 

I restarted my tapering after gaining some emotional strength from the support in this community. Two (?) days ago I cut my half Valium tablet into half again, making it 0.5mg. I noticed I did not have any anxiety or panic attacks in the past two days and with less agitation, excitability and restlessness overall. Less trembling and jitteriness. Slight improvement in sleep on the first night. Some gastro upset. This makes me more convinced about the paradoxical effects of valium. Will monitor withdrawal effects.

 

I reduced to 0.5mg instead of 0.9mg only because I have to work with a pill cutter. I am quite housebound and can't get out to buy stuff to do titration or weighing and would have problem working it out(figures are hard for my head to get around at the moment apart from really straightforward stuff. Words are easier although it does take me what seem like forever to compose, write, rewrite).

 

Gem: thank you for your kind words and healing wishes.

[Altostrata]

It's certainly a good sign that some of your symptoms were reduced when you reduced the Valium!

[Gem]

Dear Anon,

 

Really pleased to hear that you have had some improvements

 

all the best to you and hope you continue to see improvement xxx

[Meimeiquest]

Lots of happiness and admiration for you! You are a very strong woman!

[anon]

Experiencing sudden attacks of unexplained, intense sadness and pervasive hopelessness. I feel really disappointed with myself. Tried doing different things to distract. Went into the garden to look at the camellias that are flowering in the hope that it would put things in perspective. Can't see any beauty. Just wept and felt like a failure, that things would never be better no matter what I do.

[anon]

.... sitting with the sadness and hopelessness ... befriending them... accepting them, they are what they are even though I don't like them and wish they could go away... trying not to be afraid of them even though I worry about the future and I am scared.

[jacqueline]

You are so strong, have you considered any form of exercise, yoga, or meditation? Exercise helps to regenerate the brain back to a healthier state, and keeps me more meditative and happier.

[JustineMiller]

so sorry for all your difficulties. makes mine seem small. sounds like way too many drugs: the doctor's fault, not yours. sounds like would take at least a year to balance out. i totally understand as i have extreme drug sensitivities that doctor's like to discount (and how would they know? i'd like to ask them) have you tried nadhi suddhi; the alternate nostril breath, for sleep & calm? block off your right nostril and inhale very slowly through your left. exhale thru right, then inhale thru right and exhale thru left. inhale thru left, then exhale thru right. this is supposed to help calm the nervous system and usually works for me although when I am in the middle of a panic attack my breathing is compromised so it is difficult to implement, sometimes i just unblock both nostrils so i can complete the in breath, then go back to it. i hope this helps. let me know. if yoga is helpful and you get youtube, there are lots of helpful videos. just google "yoga for calm, sleep," etc. i watch these when i am freaking out, although if i am really freaked out, panicked, i get paralyzed, so sometimes i just watch them and don't try to do them.

[JustineMiller]

also, JustineMiller again, exercise is the best, although sadly i have become agorophobic which makes exercise difficult

[anon]

Thanks Jacqueline and Justine for your suggestions. Have been trying meditation and relaxation, also exercises (light only, due to low energy levels, but hope to pick up as i get more energy over time). I find the breathing exercises helpful in slowing down a racing mind and walks, even though short, are calming. I went for a walk in the rain yesterday (with an umbrella) and it was refreshing and lovely.

 

Am sleeping a bit better on some days. Averaging about 18 hours a week, still a bummer, but I believe things will improve with time if I keep doing all the right things, learn from trial and error, learn from others who have been before me, listen to my body and nurture it rather than being impatient with my progress. I think a lot of the symptoms I am still experiencing is due to the cocktail of AD, anti-psychotics and benzos I have been on for so many years. Even though I am off AD now, I may be suffering from prolonged withdrawal syndrome. My drugs were changed cold turkey each time and eventually I was told to get off all of them if they were not helping, with no assistance with tapering.

 

In a way I am glad the drugs didn't help me, otherwise I would still be on them. That's one way of looking at it. Like many people I was ignorant about withdrawal issues and how serious they can be but it explains so many things now. I kept blaming my body and felt so defective and deficient. I was not believed when I reported my symptoms or was told 'that's strange, never heard of it', etc. I went away feeling ashamed and believing there was something wrong with me, never the drugs.

 

One horror story - a lady I met in hospital was 'tapered' by her doctor (because doc wanted to start her on another drug quickly) at the rate of 75mg reduction every 3 days from Efexor. She was utterly miserable and badgered by her doc for not trying hard enough (!!!!). She was also given ECT. A once confident, successful career woman was reduced to a quivering mess.

 

My last AD was Efexor. The smallest strength I was told came in a 37.5mg time release capsule and the chemist said I couldn't split them, so I just jumped off it as I didn't know what else to do. Until now I didn't know AD were stimulants. No doctor told me this when they put me on them. But it explains so many things now - in particular why I became so overstimulated while I was on them, the unexplained excitability and panic attacks that I never had before I started all these drugs.

 

I didn't know about drug withdrawal forums as I didn't use the internet very much until I became quite housebound. My CNS and adrenals need time to heal. The panic attacks and unexplained excitability are less frequent. My sleep problems are related to being in an overstimulated, disregulated state caused by the drugs. In the meantime I do what I can to live more calmly, eat well, etc. Coming off these meds for me has been a very transformative journey. I look forward to the day when I am done with these last two drugs.

Edited May 1, 2014 by Petu
fixed text

[basildev]

Hello Anon,

 

That is indeed a horror story. That poor lady. I feel blessed to have found this forum so at least I know what I'm going through.

 

There are so many scared, confused people out there who are in withdrawal and don't know it.

 

I'm glad you're sleeping a little better. I see you do a bit of mindfulness meditation (befriending and welcoming the unwanted thoughts and feelings). My obsessive and fearful thoughts are gone now but when I was struggling several weeks ago (mine were of the 'I'm never going to get better...' variety) the mindfulness really helped me.

 

I hope you find healing and peace very soon.

[anon]

Hi Basildev

 

You are right, there are many people out there who don't know about withdrawal, are not supported but told it is all in their heads, and they suffer needlessly. I often wander how the poor lady is doing. There were also others who had their medications chopped and changed with no tapering or bridging. I shudder when I think about it, especially folks who were on very high doses, on multiple drugs and been on them a long time. I was lucky I was not on super high doses even though I was poly-drugged for many years.

 

I am glad you find mindfulness meditation helpful, too. Most times I do it informally, sometimes as a walking meditation, around the home, from room to room if I can't leave the house. For formal meditation I can sit for brief periods of 2-5 minutes at the most.

 

I have also added stretching to my routine and find that relaxing and relieving.

 

Wishing all of us here good, gentle healing.

A

[basildev]

Yes formal meditation is difficult.

 

I prefer guided meditations. I find them much easier.

 

My mum switched from Effexor to another medication and suffered horrific withdrawal. Because she didn't know what it was, her doctor put her on an antipsychotic. Now she's back on Effexor AND the antipsychotic.

 

But she has blind faith in the medical profession, so what can you do??

[anon]

Hello, I desperately need some advice please. I am at the end of my rope. I can't cope with this continued sleeplessness.

 

Last 2-3 weeks, many nights zero sleep and at best 2-3 hours broken sleep on some lucky nights. This severe insomnia has gone on for far far too long. It is dangerous. I can't function, am housebound and am constantly weepy because of the exhaustion. I feel I am going to get cardiac failure. I have been to the GP and she can't help me. She has given me some HRT very reluctantly for one month trial but I am too scared to take it and also she doesn't really think it is appropriate. Should I try it?

 

Over the years, I have tried so many medications (stress and insomnia started me on the psychiatric road), been to several GPs, seen a neurologist, a sleep physician, sleep psychologist, psychiatrists, acupuncturist, chiropractor, counselors, social workers, herbalist, occupational therapist, shiatsu practitioner, hypnotherapist; tried meditation, relaxation recordings, intense exercise, light exercise, supplements, no supplements, magnesium baths.

 

Blood pressure has gone from low to high, now have diabetes, glaucoma, fibromyalgia, hypothyroidism and arthritis. Periods disappeared within 2 years of starting cocktail of drugs. My body can't heal if it can't get the rest that it so desperately needs. Getting weaker and weaker but the adrenalin is still pumping like crazy, probably because of the stress of chronic sleep deprivation.

 

I am depressed because the insomnia is so intractable and I can't hack it anymore.

 

In the past every single antidepressant was too stimulating, even on a low dose of Effexor of 37.5 (highest dose was 225mg). I get paradoxical effects from Seroquel (highest dose 250mg), valium (highest dose 20mg)and Zopiclone (1-2 tablets, can't remember dose), Xanax (2-4mg). Combining all of them doesn't knock me off. Some of the AD made me manic. I never had mania, panic attacks, depression, unexplained restlessness or excitability before the drugs.

 

Given that none of the meds I have been on have ever worked, given my sensitivity to AD, paradoxical effects from other drugs, adverse side effects (some of them dangerous) from all of them, what options do I have? Is there any point to reinstate a small dose of AD (Effexor 37.5 was my last AD) or any of my previous meds?

 

Please help. I don't know what to do. I don't even want to try to be brave and strong anymore because this suffering sucks big time.

Edited May 1, 2014 by Petu
fixed text

[Altostrata]

I'm sorry, Anon. Like so many of us, it sounds like you are hypersensitive to neurologically active drugs. Those paradoxical reactions keep on causing overstimulation, from which you need to recover. There may be no answer for you in drugs. I know how difficult this is because I'm in the same situation.

 

What was your last attempt at medication?

 

Are you under the care of a cardiologist?