joe90: hello everyone (post withdrawal syndrome)

[joe90]

Hello everyone,

 

My username is joe90.

 

In 2008, in the context of a lot of stress at work and in my private life, I experienced acute anxiety and a severe panic attack. I was 39 years old, and had no history of "psychiatric illness".

 

My GP, who, looking back, was clearly out of his depth, put me on a benzo (xanax) and an AD (lexapro).

 

Some two months later, I was so sick I can't describe it, and there were fears I had serotonin syndrome, so I stopped the lexapro cold turkey. I got sicker still. Much sicker.

 

There was a lot of detailed to-ing and fro-ing after that, but to cut a long story short, I did a crossover to valium and withdrew the benzo. I had the much-feared of horror withdrawal. It took two years, and it was profound suffering.

 

I'm now off all psych drugs for four years, but my life lies in ruins. I have a severe post withdrawal syndrome. The symptoms I experience are:

 

Sleep disturbances; nightmares; nausea and vomiting; dizziness; loss of balance; sense of severe internal vibration; severe formication; severe burning sensations; severe muscle and joint stiffness, rigidity and pain; severe nerve pain; muscle twitching; myoclonic jerks; severely compromised cognition and ‘clouded thinking’; speech problems; feeling ‘concussed’; severe headaches; poor physical coordination; exhaustion; severe hyperacusis, tactile sensitivity and photosensitivity; distorted vision (vision appears ‘cloudy’ and ‘wavey’); severe tinnitus (‘white noise’ in left ear, popping sounds in right); extremely sore eyes; severe social anxiety; occasional terror; occasional paranoia; intrusive memories; intrusive thoughts; general malaise.

 

I'm here just to have people to talk to. I need friends.

 

Love to all,

 

j.

[Petunia]

Welcome Joe, and thank you for sharing your story.

I'm so sorry you have been suffering for such a long time, it sounds like you had a bad reaction to the medication, some people don't tolerate SSRIs well at all, you may be one of those people.  How long in total were you taking Lexapro?

 

How did you stop taking the Valium?

 

I also have post withdrawal, or protracted withdrawal and am very familiar with a lot of those symptoms you listed, my life has also changed dramatically and I feel very isolated at times, you will find a lot of friendly support here.

 

What kinds of things to you do to help you manage your symptoms?  We have a section filled with helpful ideas about drug-free ways to manage symptoms, you may find some new ideas here:

 

http://survivingantidepressants.org/index.php?/forum/8-symptoms-and-self-care/

 

Especially see the pinned topics at the top.

 

Also, it would be helpful if you put your drug and withdrawal history in your signature, it helps members to easily see your situation when replying to posts, instructions for how to do that are here:

 

http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

 

I'm sure others will be along soon, make yourself at home and look around the site, there is a lot of good information here.

 

Petu.

[WinningThrough]

Joe, I am so very sorry and my heart goes out to you.

 

I'm just wondering, what is your diet like? Do you take any supplements?

 

Someone more experience than me will be along but I just wanted to send you healing thoughts.

[WinningThrough]

My post crossed with Petu's. Someone more experienced DID come along to help!

[joe90]

Hi all,

 

I was only on lexapro for about two months. Its hard to tell what of my protracted withdrawal is caused by that, or by the benzo withdrawal thereafter. A combination of the two, no doubt. Its somewhat immaterial - I am where I am.

 

My diet is good: I eat mainly whole foods, lots of rice, veg, fruit, oily fish etc.

 

I currently take no supplements, and have been of the mind that to do so adds unnecessary risk, but i am slowly losing faith with that perspective, and am willing to cautiously try things now and see what difference they might make.

 

Recently, I can feel my emotional health becoming worse and worse. I am so tired, and there seems to be so little change in my symptoms that I have become despairing. Just wish I could see some change.

[Addax]

Welcome Joe.

 

This forum has been very valuable to me. Just reading through the stories and finding solace in the shared journey has helped me, not to mention the wealth of knowledge and support shared by the other members! I'm so glad you found it. Definitely read the link Petu provided.

 

What is your physical activity like? I ask because I know how helpful it can be for many people, including myself.

[joe90]

Hi Addax, everyone,

 

Thank you for the warm welcome.

 

My physical activity has actually declined. During acute withdrawal, I was housebound for over a year. i slowly ventured out again, and got back to walking - zombie-like - for up to maybe 70 minutes. I was drawing on my residual conditioning as I had been a marathon runner prior to this mess. But as that fitness began to recede, and as my emotional well being started to slip in the face of these awful symptoms, my ability to walk has got worse. Sometimes, my sense of anxiety and overwhelm is so severe I find leaving the house difficult.

 

I now have to force myself to walk. Today I managed 40 minutes. I have also started a one on one yoga class, and had my first one last week. We went extremely gently, yet 48 hours later I was very, very ill as a result. My nervous system is, it appears, still extremely vulnerable to any stress at all. Even yoga. :/

 

I'm trying my best to get out every day. I really fear for my state of mind if I do not.

[Bellisimo]

HI Joe!

 

I feel so sorry for you that you have been suffering so bad for so many  years

 

I hope you will feel better soon

 

sending you a big hug!

[bubble]

Hello from me too!

 

I'm glad you are here with us. I like your attitude and the way you are managing things. Really sorry that this has been going on for 4 years now

 

I believe you will find a lot of ideas on how to manage your symptoms in our Symptoms and self-care section as well as people struggling with the similar issues (and overcoming them).

 

Off the top of my head - Wulfgar and MoodyBlues are having problems with tinnitus and found something that relieves it (btw, they are also amazing guys with a great sense of humour so you might want to check their threads).

 

Welcome once again!

 

bubble

[Altostrata]

Welcome, joe.

 

Please do look in our Symptoms and Self-care forum.

 

Many people do better with fish oil and magnesium supplements, see
http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
http://survivingantidepressants.org/index.php?/topic/1300-magnesium-natures-calcium-channel-blocker/
 

[Rhiannon]

Hi Joe, just another hello and welcome.

 

Have you read Gia's blog Beyond Meds? You might find some consolation and help there. She has had an extremely challenging course and seems to be finally coming out of the woods.

 

Being sensitive to activity (and stimulation of all kinds) is not unusual with postacute withdrawal syndrome. It does appear that gentle walking, preferably in a soothing natural environment (a park or trail, for example, rather than a street with traffic), can support the nervous system.  

 

You might want to consider just doing a 30 or 40 minute walk every day or every other day, whatever you can, walking very slowly and meditatively, focusing on calming rather than stimulating the nervous system.  There is some suggestion in research that it's the alternating movement of arms and legs that's helpful, not the speed, and exercise can stimulate cortisol release (which you don't want), so you don't need to push at all, just relax and breathe and move gently.

 

I'm so out of shape and overweight now because of the limitations that withdrawal has put on my ability to work out--I used to be not a marathoner, but worked out every day for hours when I could, weights, aerobic, swimming...sigh...I can really relate to what you say about the deconditioning.

 

And about having to drag myself out of the house for those therapeutic walks. When I can't do it, I pedal my exercise bike at home instead, because you still have the alternating movements of the legs and it's better than nothing.

 

Another thing that is surprisingly important and supportive to the nervous system is social contact. I have found that if I'm just going to sit around, sitting in the library and making eye contact and a bit of small talk is better than sitting at home. And of course actually interacting with supportive friends is good if you can manage it. If you have social support at home, of course, this may be less critical for you.

 

Anyway, welcome. I hope you can find the support you need here to help you through your healing.

[Jemima]

Welcome to the forum, joe90. I'm glad you found us.

[joe90]

hello everyone,

 

Thank you for the warm welcome.

 

Rhi, yes, I've been an avid reader of Beyond Meds for a long time now. i would go so far as to say that it has on occasion held me together when I have been feeling despair.

 

I agree as well that gentle walking is the best activity. What baffles me though is that my tolerance is getting worse, not better. It is as though my "self", my "spirit", my whatever it is that makes me me, is shrinking under the trauma of living like this for nearly six years.

 

As an example, my experience yesterday was so extreme - outrageous pain throughout my body, but especially my head, so severe my eyes actually roll. I've had every test under the sun, and all come back negative, and all this started with psych drug withdrawal. I have become so afraid of the symptoms that I am a husk.

 

One foot in front of the other.

 

Much love,

 

j.

[bubble]

I'm really sorry things are so rough.

 

Are you familiar with windws and waves pattern of recovery? Here is the link to this topic we have here (reading and re-reading it saved me from despair on numerous occassions): http://survivingantidepressants.org/index.php?/topic/82-the-windows-and-waves-pattern-of-recovery/

 

Would you say that you have periods when things go horrible like an awfully painful cramp and then abate and maybe even glimpses, however shor,t of the return of positive feelings, return of you? Sometimes, like after a storm, shortly after things are at their worst, there comes a release. I hope it happens to you. It will for sure. It's just a matter of time and sometimes these things take agonisingly slow. Especially since every minute in pain is too long. But it stops eventually. One foot in front of the other is sometimes the best and only thing we can do and you are doing it. Plus investigating what can make it easier. And there are such things. As one peer run organisation calls themselves: We Shall Overcome

[Addax]

Joe-

I'm so glad to read that you are walking! That's great...even though if feels like a chore sometimes. The benefits of physical activity to our brains are many, with some research even suggesting it supports brain plasticity.

 

You wrote about becoming ill 48 hrs after yoga. What did you mean by ill?

 

Will you try it again? Have you tried meditation? There are free videos on YouTube.com and a number of Apps for yoga, meditation, and relaxation breathing that you could use for those days you don't want to leave the house, if your interested.

 

If you're not familiar with the concept of waves and windows, definitely read the link bubble provided. Knowing this pattern exists and that other's experience it has helped me survive many a wave!

[Rhiannon]

One foot in front of the other, indeed. We do what we must. 

 

Thank you for sharing yourself with us. I'm glad you're here.

 

Hugs.

[Petunia]

I agree as well that gentle walking is the best activity. What baffles me though is that my tolerance is getting worse, not better. It is as though my "self", my "spirit", my whatever it is that makes me me, is shrinking under the trauma of living like this for nearly six years.

 

I haven't been going through this as long as you, for me its been just under 3 years, but I relate to what you have written about feeling like my'self' is disappearing.  The way I have dealt with this is by trying to adopt a spiritual perspective.  (please disregard this if it doesn't resonate) The way I'm understanding this is that what is breaking down is a false ego self, which wasn't doing me much good anyway.  But its still painful and frightening, and trying to hang onto what control it still has left.

 

I've also been confused about my own exercise tolerance.  A few years ago I was able to do 3 high intensity aerobics classes, back to back, but now, on a bad day, if I try and rake up some leaves for more than 10 mins, I can feel like I'm about to pass out.  I also went through a period where I found it almost impossible to leave the house, and when I did, because I absolutely had to, the experience was horrendous and seemed to cause even more trauma.  But now, its not so bad in general.  I still don't go out much, but its more of a choice now, I can't seem to find many good reasons to go out and do the things I used to do.

 

Walking used to fill me with absolute dread.  I kept trying to do it, but it was like I was walking around while being in a bad drug trip, it was always a relief to get home to 'safety'.  But now, walking, usually around my local park is more of a neutral experience.  I do it, because I'm told its good for me, but most of the time its like there is just an empty body walking around and 'I' am somewhere else, observing from a slight distance.  From a psychological perspective, this is often called depersonalization and its common in withdrawal.  But from a spiritual perspective, when there is no sense of a self, just a direct experiencing of the world, this is a highly desirable state and is often described as being blissful.  I think that if there was no fear present, but complete acceptance, then it would feel good.

 

I can really only advise you from my own experience on this.  Some people when going through withdrawal seem to feel better after intense exercise, but others are the opposite.  I find it best to listen to my body and do as much or as little as what feels best.  I regret all the times I pushed myself to go out walking when I was filled with dread because I feel like its added to my trauma.  But now, when I do manage to walk, I make sure that its not adding to my stress and it seems to be helping now.

 

As an example, my experience yesterday was so extreme - outrageous pain throughout my body, but especially my head, so severe my eyes actually roll. I've had every test under the sun, and all come back negative, and all this started with psych drug withdrawal.

 

How long did this pain last?  Did you do anything which helped?  (ignore this too if it doesn't resonate), but this reminded me of something I read earlier today.

 

"Localized Tension and Generalized Pain

As I said, so long as there aren't any medical conditions that you're unaware of or avoiding, energy can feel painful. It's not that the energy is hurtful. It's the issues and resistance in your body that's hurting you. The energy is pressurizing it. Energy is like water. It just wants to flow. But if it hits a dam--a blockage--it starts to build."

 

If you are interested, you can read the whole article called

Riding the Energy Rollercoaster: Surviving the Awakening Shifts at http://www.spiritualawakeningprocess.com/2011/08/riding-energy-rollercoaster-surviving.html

 

I haven't experienced a great deal of physical pain, although there has been some, most of my symptoms have been general body tension and inner vibrations, extreme emotions, temperature changes....well, a huge list actually.  But as I wrote, its helped me with acceptance to adopt a spiritual perspective of my ongoing withdrawal experience.

 

When difficult symptoms persist for a long time after coming off psyche meds, as they do for some people, I think its important to do whatever it takes to take care of ourselves, keep up our morale and keep going, one day at a time so that we can allow the process to complete.

 

(hugs)

 

Petu.

[LexAnger]

I'm very sorry joe for your suffering! I can imagine how hard it is for you to hang on everyday as I do have similar experience since a yr ago started tapering. Even my issue is mainly just the severe pain over jaw, head, neck and back, it takes all my strength to go through every minute every day. From what I learned in many years, time alone is the only cure to this dread situation. I tried all possible things I found online nothing really helped. One good thing is you are already 2 yrs from the tick, so everyday you survive makes it one day closer to the light and freedom!

 

For pain management, I found it quite effective to meditate to the linked video

http://quietmindcafe.com/pain-management.html

 

The best way is to do it in a quiet and dark place, lying down with eyes closed so you can focus completely and mind into it.

I remember one saying from a post here, trying to go with the waves instead of fighting against it. Accepting all will help with one less additional emotional stress from being upset, freighted, frustrated by the situation itself.

 

I know it's hard regardless, but remember you are not alone and thousands are suffering and understanding.

[joe90]

Thank you for all your responses. I will get round to answering them directly, but I'm so ill today and feel utterly overwhelmed and forlorn. Every moment is a struggle.

 

Buy the way, on the issue of waves and windows - I've never had a window. None. Ever. Well, perhaps an hour about a year ago.

[Petunia]

Joe, please take your time in replying, we understand.  I remember when I first joined, it took all my energy to write one post and when I got a heap of responses, I felt completely overwhelmed and incapable of replying in the way I wanted to.

 

That one little window a year ago might not seem much, but its evidence that your brain is capable of feeling better.

 

Petu.

[joe90]

Hello all,

 

I only joined this board a few days ago. The need to join felt strong as I felt I was nearing a crisis and wanted to be amongst people experiencing similar things.

 

That crisis has now hit. I am experiencing incredibly severe symptoms and I'm non-functional. I've even gone to stay with my parents as I'm not really capable of looking after myself.

 

Petu, thank you especially for your posts. I think much of my symptomology is exacerbated by blocked energy stemming from a deeply dysfunctional relationship in my life. I know this to be true but feel that acting now, whilst this ill, is very risky. My emotions are so powerful, strong and overwhelming in this state.

 

This is such a difficult experience.

 

J.

[Petunia]

Hi Joe,

 

I'm glad to hear that you are staying with your parents and have some help.  I agree that this is a difficult experience, we have to do what we can to get through it and let time pass so that we can heal.  Did you look at the links Alto posted earlier in your thread?  Magnesium and fish oil really do help most people.  I find that the magnesium has a definite physical calming effect.

 

Please take care of yourself and minimize stress, in withdrawal, dysfunctional and abusive relationships add stress to our already sensitive nervous systems and make recovery slower.

 

Petu.

[mlrp]

 

Being sensitive to activity (and stimulation of all kinds) is not unusual with postacute withdrawal syndrome. It does appear that gentle walking, preferably in a soothing natural environment (a park or trail, for example, rather than a street with traffic), can support the nervous system.  

 

...

 

I'm so out of shape and overweight now because of the limitations that withdrawal has put on my ability to work out--I used to be not a marathoner, but worked out every day for hours when I could, weights, aerobic, swimming...sigh...I can really relate to what you say about the deconditioning.

 

Just a hello, Joe, from another newcomer who cares about you. Even though our journeys are decidedly unique, I do understand some of what you have been through. My depression came as a result of a traumatic, emotionally abusive relationship.

 

It particularly saddens me to see it noted here that intense physical activity doesn't work for us the way it does for people without these issues. Like Rhi, I used to be very fit and active. I was a marathoner and loved the endorphins and stress-relief of working out. For me, this is a huge loss. I'm trying my best to accept and even, possibly, celebrate the new, gentler way I'm going to have to experience my physicality.

 

But enough about me.  Sending you healing thoughts [and prayers]. It's good to have friends. I hope you will have a window soon.

[WinningThrough]

Sending hugs Joe. You're incredible.

[joe90]

 

It particularly saddens me to see it noted here that intense physical activity doesn't work for us the way it does for people without these issues. Like Rhi, I used to be very fit and active. I was a marathoner and loved the endorphins and stress-relief of working out. For me, this is a huge loss. I'm trying my best to accept and even, possibly, celebrate the new, gentler way I'm going to have to experience my physicality.

 

Me too. I ran six days a week, doing about 45 miles a week, and was a keen - if distinctly average - club runner. I too did marathons. I was also a surfer, which is by some distance the most physically demanding activity or sport I've ever done, and I've done many! The sense of loss in relation to these was profound, but I have got past much of that now.

 

My real sense of loss now is about my wife. We're still together, but she has lost interest in me. I am feeling this fully for the first time, and it is profoundly upsetting. I feel utter devastation.

[Altostrata]

Joe, you are brave. Focus on taking care of yourself. As you get stronger physically, she may understand you've changed because you didn't have any other choice.

[Addax]

Joe-

 

When I read your post it occurred to me that grieving seems to be a component of withdrawal for many of us. Grieving the loss of the ability to do what we once did, even though it may very well be (and I suspect likely) a temporary loss. If only we knew how long we'd have to go before we could return to doing those things again. Our bodies (CNS) will let us know when we can get back to these things, but right now I guess it's asking for some rest while it heals.

 

I'm sorry to hear about your sense of loss about your wife and what a difficult time this is. I agree with what Alto said: You are brave, and it may take her time to understand why you had to be.