Aozora Hoping for Hope

[Aozora]

I'm a man in my late 40's. For most of my life I have been healthy and active. Roughly three years ago I found myself falling into depression after business difficulties. I tried to stay active and take a drug free approach, but the depression worsened to the point where I sought the help of a psychiatrist. I was prescribed Lexapro and Ativan, which I took for about four months, then decided they were not helping and quit cold turkey (big mistake). I went into a state of constant panic, horrible insomnia, unbearable depression and too many other symptoms to list. My psychiatrist tired other antidepressants but I found I could not tolerate them. The only med that provided some relief was Klonopin, but I soon found I was needing to increase the dose. I was not warned about tolerance and withdrawal. I finally got on the internet and learned about the dangers of benzos then tapered off Klonopin over 10 months, but never stabilized no matter how long I held a dose for. 

 

Earlier this year the depression and anxiety became so overwhelming I was willing to go to an inpatient psychiatric ward and received ECT along with with a cocktail of meds.  The ECT did not work and after the horrible effects I've suffered I was to scared to keep taking the meds.

 

My condition continues to worsen. A year ago I could go for a jog or attend a yoga class, go to the market, and basically take care of myself.  Now I struggle to do even a short walk or prepare a meal. I'm in a horrific state that I don't have the words to describe.  My brain is constantly going 1000 miles an hour with panic and dread. It's difficult for me to focus on anything for longer than a minute. I feel intense pressure in my head, like it's being squeezed in a vice or being filled with cement.  My back, neck and shoulders often become painfully tense.  I'm nearly bedridden and my physical health is deteriorating.  Insomnia is taking a huge toll on my body and mind.  Before the meds and I had been a great sleeper (asleep before my head hits the pillow).  Now I'm lucky to get more than 2 hours of broken sleep a night.

 

My GP has no idea how to help me.  I've been to 3 neurologists and at least a half dozen psychiatrists, none of whom are willing to entertain the idea that my condition could have been brought about by SSRI/Benzo withdrawal. At this point I probably need to be back on meds but which meds and how can I find a doctor I can trust after my horrible experiences?  Is it even possible to heal form a cold turkey w/d of a benzo+AD?  I'd love to hear form someone who survived and how they accomplished it.  

 

I'm hoping someone on SA can recommend (via PM) a trustworthy doc on the west coast (U.S.) preferably in the Seattle or San Diego areas. 

 

Thank you in advance,

May you all be free of suffering and find peace.

[Altostrata]

Welcome, Aozora.

 

It sounds like you have withdrawal syndrome from going off Lexapro, exacerbated by benzo withdrawal, going on and off other psychiatric drugs, and ECT.

 

I'm very sorry you're going through this. A doctor who would recognize this syndrome would be very, very rare.

 

Have you tried 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/

 

These can be very helpful, particularly the magnesium.

[Nomoreheadmeds]

welcome 'aozora' .

I wish you well

[mammaP]

Welcome Aozora, I am so sorry to read your story, and see the suffering that you are going through. Your poor brain and nervous system have taken a battering with all the drugs and ECT and they need time to heal and recover. There are no drugs that we would recommend at this stage because there have been so many. It's unlikely that they would help, as you've discovered already. Things will get better, but take time, everyone is different so there are no time limits, some recover sooner and others take a long time. The best thing you can do id to take good care of yourself, eat well, take walks in the fresh air and try to keep going even though it is so hard. You will experience windows and waves while your brain is healing, and will have some times when you feel better (windows) followed by what feels like relapse (waves) . You can read about windows and waves here... 

http://survivingantidepressants.org/index.php?/topic/82-the-windows-and-waves-pattern-of-stabilization/

 

There are many topics in the symptoms and self care forum which have info on various things that can help with withdrawal, you might find something useful there. 

Alto has suggested fish oil and magnesium and I would recommend giving them a try, they have helped me a great deal and help many others here too. Some are not able to tolerate them so start with the smallest dose and work up to a dose that helps you. Again, every one is different and some need more than others to get the benefit of them.   

 

Hang in there and keep going, eventually you will feel better and be able to put all this behind you as you move on in life. Take a look at the success stories to see people who have been where you are and recovered.  Most people who get better do so gradually and don't come back to tell us they are recovered, it is so gradual and they get on with living their lives which is brilliant, but some do come back and write a success story for us.  You will be one of them one day....

[Aozora]

Thank you all for the warm welcome and responses.  I have been taking fish oil and magnesium.  I've also tried many other supplements with little noticeable benefit.  I would very much prefer a drug-free approach but as my condition continues to deteriorate I fear some medication may be necessary.  I literally have not had a good night's sleep in 3 years.  It's inhuman torture! I'm barely able to sit at the computer and type and am very close to becoming a total invalid. I would give anything to go back to just being 'depressed'.  I wish I would have known psychiatric medications can lead to such horrors. (sorry, venting)

 

I have a friend who went through something similar and is currently on high doses of seroquel and klonopin to sleep, and I suspect will be on increasing doses for the rest of her life.  I'm hoping to find a path to healing rather than a chemical sledgehammer, and be able to count myself among the success stories.

[calithebold]

Hi Aozora

I'm sorry to hear you are suffering this way. I have also been polydrugged and in the last 5 years have been hosptised about 20 times but luckily no ECT. I'm still on 5 of those drugs and have just started tapering after stabilising from the CTs last year and earlier this year. It really does suck and it's hard but we can do it after what we've already been through. Please try and hang in there. You are in my thoughts

[Orchid1976]

Welcome Aozora. Wishing you peace, hang in there. Magnesium made a big difference for me, give it a try. Meditation, prayer, long walks with a friend in the nature are very effective. Make a plan that works for you and stick to it. It will be a slow progress, but it will happen.

Best regards.

[dalsaan]

Hi Aozora,

 

You might try qi gong exercises, some of our members have found these useful for sleep, anxiety etc

 

Here is a video with a seven minute routine, why not give it a go

 

 

Dalsaan

[Hudgens]

I had bad insomnia for almost three years before it got better (now 5-7 hrs a night). And all I did was drop too fast during a taper from Effexor.

 

The big problem is that Dr.s create the problem with drugs and then try and fix the problem with more drugs which only creates more problems and more drugs.

 

Therapy is the best solution-try and get a therapist who understands Cognitive Behavioral Techniques and look into mindfulness on line. Mindfulness will eliminate up to 50% or more of your suffering.

 

Antidepressants change the nervous system around in a very short amount of time (in your case only a few months) it takes a long time for it to shift around again back to normal-but it does happen-it's happening right now for you. I had most of the awful withdrawal symptoms others talk about on this site at one time or another and I've come through it and am fine again-11 months post taper.

 

Have you had any even short periods of feeling better?

[LucaDiProspero]

Hi Aozora,

my symptoms are very debilitating too (started nearly a year ago) but I'm trying to go on without meds.

Best advice here is to continue doing activities, exercise (gentle walking) and CBT...that's what I'm doing at least.

[Petunia]

Welcome from me too Aozora,

 

I was both sad and angry to read about what has happened to you, but unfortunately, your story is not uncommon here.

 

The big problem is that Dr.s create the problem with drugs and then try and fix the problem with more drugs which only creates more problems and more drugs.
 

 

As Hudgens wrote, you go to your doctor with a simple emotional problem, and you end up much worse off with multiple problems caused by the drugs which never really fixed the original problem in the first place. Most emotional or 'mental health' issues are much better suited to being addressed in counseling. Drugs don't cure anything, if they work at all, they may mask symptoms or blunt emotions for a while, making things seem better, but behind the scenes, doing damage to your entire system.

 

But what you have in your favor is that you are already drug free, you are no longer doing damage to your brain and nervous system, you are already on the path to complete recovery.

 

I know how hard it is to go through this, I've been pretty much bed bound/house bound on and off for the last 3 years, but I'm starting to make significant recovery now. I've been drug free just over 2 years.

 

I hope you listen to the good advice you've been given, and stay away from you doctor, as well intentioned as most of them are, they just don't have a clue about how dangerous psyche drugs can be and usually end up causing more harm in the long run. Unfortunately for patients, its all too easy to blame the worsening condition on the original illness.

 

Please stay in touch and let us know what you decide. We will be here to support you whatever decision you make.

 

Petunia.

[Aozora]

A million thank yous everyone who has responded.  Your kind words give me solace.  It's good to know I'm not alone in this suffering.

 

Unfortunately I have not experienced any windows in more than 2 years.  My current condition is not allowing me to do much to help myself such as meditation, exercise, or eating healthy.  I've barely slept at all for several weeks now and spend my day in a constant state of panic/dread.  It's taking all the effort I can muster just to focus enough to type this message. 

 

I was meditating daily but the withdrawal induced symptoms have kept me from being able to sit.  My head feels like it's going to explode, my ears are ringing and my body aches/ trembles.  Has anyone here been experienced such difficulties and still been able to meditate?  To me it seems beyond even radical acceptance when every second of consciousness feels unbearable. 

 

I just returned from my pdoc who wants me to take 2mg Klonopin tonight.  I'm terrified to do this but I just can't go another night with zero sleep.  Is there no other way?

[Aozora]

Hello Friends,

I'm sad to report that 2016 was a very difficult year for me.  I'm hoping someone here at SA could provide some insight into my condition and how to proceed.

 

2016 began with a new psychiatrist overreacting and putting me on an involuntary hold.  The experience was traumatizing, I'll spare everyone the details.  I was released on 80mg of Latuda, Lamictal (can't remember dose),1-2mg of Knolopin and Lunesta.  I found a different psychiatrist who tapered me off Latuda, increased Lamictal to 400mg, switched me from Klonopin to Valium, has experimented with Pristiq, Nuvigil, Gabapentin, Lithium, Belsomra, Saphras and Remeron.   As if that weren't enough, neurologist put me on Mamentine.  None of the meds ever helped me feel any better, but at least I'm getting a few hours of sleep.

 

 

Currently I'm taking:

100mg Lamictal (Tapered down from 400mg over about 4 months)

4mg Diazepam (Tapered down from 10mg over about 9 months)

 + 1-4mg ocassional 'rescue doses'

200-600mg Gabapentin

 

I'm not trying to over-dramatize or seeking attention, my daily existence a LIVING HELL. 

 

Head Pressure - My head feels like it's clamped in a vice or about to explode. MRI's have not shown anything.  I've seen several neurologists who diagnose it as a form of migraine but the treatments I've received have not helped.  I recently had Botox injections.

 

Insomnia - Since coming off Klonopin I have not been able to sleep without meds. I went a couple years with 0-3 hours of sleep a night.  My current meds are allowing me about 5 hours sleep.  A recent sleep study showed that I'm not getting enough deep sleep.

 

Mental State - My mind is in complete chaos, I can't focus enough to read or watch TV.  I often don't remember what I was doing (leaving the stove on, ect...). I spend the day dizzy/disoriented/confused, like someone just woken form a deep sleep, but I'm too agitated to relax.  The slightest stimuli or situation can send me into a state I can't describe, not quite a panic attack, more like 'primal dread', what I'd imagine a person would feel if pushed off a cliff, seeing the ground coming towards him. 

 

Muscle Pain/Tension - My back, neck and abdomen get painfully tense, especially towards the afternoon and evening. Little if any relief form stretching, yoga, hot baths.

 

In the past few weeks some new symptoms have arisen;

 

Heart Pounding/Palpitation - My heart rate is just a little faster than normal but it feels like it's pounding harder than normal, even when laying down.

 

Extreme Sensitivity - Sounds that would not usually bother me such as a dog barking or car starting trigger a startle response.  Ordinary sounds like a a voice on the TV sometimes make me cringe like nails on a chalkboard.  Also I've become very sensitive to light and temperature.

 

Many other symptoms, too many to list.  I was in perfect physical health before taking psych meds!

 

Housebound and getting to the point where I can no longer care for myself, I'm scared.

 

I've been seen by more than a dozen doctors, GP's, Psychiatrists, Neurologists, Endocrinologists.  None of them seem to look at the whole picture, they only try to treat isolated symptoms.  Any mention of protracted withdrawal, excitotoxicity, or iatrogenic causes is met with a brief blank stare and dismissed.  It would be wonderful if there were something in the medical literature I could give a doctor he would take seriously.  Doctors seem suspect of 'Dr. Google', rightfully so, but I think there is some valid research out there that could shed some light onto my symptoms.

 

Has anyone experienced anything similar?  If so what helped?

 

Does anyone know if a case or diagnosis in the medical literature that may fit my symptoms?

 

 

Thank you in advance, I wish you all good health and happiness. 

[scallywag]

Have you checked the Journals forum here on the site?

 

These are currently the most recent topics in the forum list:

New classification of SSRI withdrawal.

Neurobiology of antidepressant withdrawal.

Catastrophic Complications related to psychopharmacologic drug withdrawal.

[Aozora]

Thank you for the reply scallywag.  I'll search through the articles for anything that could point my dr's in the right direction.

 

Has anyone experienced Head Pressure?  If so please let me know if you found anything that helped.

[IHadPassion]

Yes, head pressure is a common symptom, I've had it for several years now on and off.  I've found that it gets worse if I eat sugar or simple carbohydrates or exercise too heavily among other things.  Haven't found a good solution other than avoiding those. 

 

BTW, I'm down in Tacoma. 

[Aozora]

IHadPassion, thank you for replying.  I've developed high blood sugar and try to watch my diet.  Moderate exercise seems to help my head pressure a little, maybe just because it provides a distraction, but I also can't do anything vigorous.

 

From your signature your story sounds similar to mine.  

 

I hope you find your passion again

[Aozora]

I'm debating having a Lumbar Puncture, the head pressure is so unbearable and my Dr. is running out of ideas.

 

Anyone have an LP?  

Is there anything in the literature about Psych Med and withdrawal causing anything that would be picked up by an LP?

[Mort81]

I had the most horrific head pressure for 3-4 months was completely debilitated on top of that was just as equally dizzy. The head pressure finally abated about two weeks ago. Only thing that helped me was Tylenols, ice packs on my neck and time. Absolute nightmare