Can I offer you hope

I'm on here scouring for protracted success stories.  Thank you so much for coming back and posting! And congrats on being functional, happy and successful again! I am 3 years 2 months off and felt great by 19 months but had a setback which was kind of like a CT.  Seeing posts like yours is what keeps me hopeful that I too will heal and you know we never believe it'll happen when it's been so dang long.

Hope that last 10% comes back soon!

All the best!

Wow! Absolutely love your story! You been through a lot and I’m so happy you doing much better.

Your story very similar to mine the difference is I’m still in it after 5 years. Still looking for a cure or just find something what will give some relief from my head scalp pain and anxiety depression. After crying for 5 years with severe pain I’m now crying only 2-3 times a week... I guess there is some healing happening....

Hoping and praying and working hard when ever  I can, to get there where you are now.

Have a wonderful life

Vica

Bump

Thank you for offering hope. I get tired of reading the bad stuff, TBH, even in the success stories but it's worth reading that you are healed and as good as new. Yes, you can offer me hope:) I'll take it.

 

Congratulations on your recovery and thank you for taking the time to write a success story. I appreciate it,

 

HM

So glad you are better!

What is TRT?

Looking at the list of things you did, how did you go to so many drs. or try so many things if you were very sick?  Could you still drive and function?

Thanks.

On 08/06/2021 at 19:25, [[c...] said:

It's been a long time since I've been here. Partially because once you start feeling better, this is the last place you want to be. I'm still not 100% but I'm really close now and so I will finally write my success story as I promised I would do long ago.

My drop date was October 2016. I tapered in 2-3 months (way too short - don't ever do this) from 0.5mg (+/- 0.25mg - don't ever do this either) of Clonazepam which I took for almost a full year. I took Ativan PRN for 6-9 months before that. I lost my career, my soul, my life as I once knew it... it has taken me 5 years to heal and I'm about 90% at this point. I'm working from home; a contract I started while I was still very sick. I'm looking after myself, I'm still married although the last 5 years took a big toll on our marriage. I still have friends; these relationships will come back when you're feeling better if they are true friends... don't ever think anyone will understand what's going on because they won't... ever. Only the people here and who have passed through here before you will understand the level of suffering endured.

I am exercising 5-6 days a week, biking, lifting weights, keeping my diet as tight as possible; no sugar, no dairy, little to no gluten, good carbs, low glycemic foods, low inflammation foods, no alcohol, no caffeine, no drugs except for some cannabis here and there primarily for sleep which I still have some trouble with (I'm 47 now). If it tastes really good and it's not natural, it's not good for you. So don't eat it.

I'm living again... back from the dead.

I was a very extreme case; really really sick; suicidally depressed, major anxiety, anhedonia, tremors, shaking, terrible head pain / headaches every single day, not being able to nap or sleep that well, lost so much weight because I was never really hungry, my nervous system was shot, adrenal system shot (and still recovering), no energy, no brainpower, no ability to do much but lay in bed and research how I was going to get out of this mess. I was the sickest of the sick (or certainly up there) and I recovered. So believe in this if nothing else. Believe and keep on going... that's all you can do.

After I had to quit my job I spent 2.5 years in bed for the most part until finally I said to myself I'm either going to get better or I'm going to die trying. I reached out to everyone I could to find a job or something I could do from home. I found a contract with an old boss who wanted to help. I was suicidal for most of that time and was so sick but I kept getting up everyday to do what I had to do... the money wasn't great but it was and still is a big part of my healing process. I'll be looking for a new job this year because I am at that point where I can!!

I hated people who kept telling me there was hope and that I would get better. I didn't believe them and it just made me feel worse because I couldn't see any light at the end of a tunnel that never seemed to end. I suffered and cried most days for 1200 days+.

I know a lot of you are in a terrbile state; you just can't see a way out. I was there... I was right there.. read my old posts. But healing happens, ever so slowly... plasticity happens and with a lot of effort, a lot of doing stuff you don't want to do, a lot of making yourself do the things you absolutely need to do every single day no matter what to get your body and your brain to function again. It happens.

I can't believe I'm saying these words because I didn't believe it for so long. But it's true... you will get better. Some will take much longer than others but it will happen. Stay the course; don't give up. I wanted to give up so many times <I'm shedding a tear or twenty while I write this> ...this insiduous poison that they prescribe with no consideration of what it could do to people who are susceptible to protracted withdrawal. If there was a button (thank god there wasn't) I would have pushed it. Makes me sick to my stomach just thinking about it. You may be wishing for a button but don't do it... stay the course, make it happen, it takes everything out of you to keep going. You have to keep going day after day after day... until the symptoms fade away.

There are things you have to do if you aren't doing them already. Diet is a big one... pay attention to your body and eliminate everything that's not good for you. No sugar, no dairy, no white bread / pasta / and stay away from gluten until you know it's not affecting you, no caffeine, nothing from a box (unless you're starving), no alcohol, no drugs, no nicotine - this is where I'm stuck; I still use a nicorette spray that I started using when I quit smoking. Once I'm done with that I think I'll get the missing 10% healing I'm looking for. Exercise or walk, or crawl, or whatever you can do to get yourself moving, do it... every day no matter how shitty you feel. And the day after that, do more and so on and so on... like you're a soldier in a war trying to gain ground. Fight for it!! Push yourself every day... get up, make your bed, go lay on the couch if you're not feeling well or the floor or outside on the grass in the shade. But don't stay in bed.

Lose weight if you need to... become a lean, fit, sick as sh*t machine. Make it happen through diet and light exercise to start (constantly challenge yourself). But start. Start somewhere. Start right now if you haven't already. Make a daily plan... stick to it; and hold yourself accountable for your own healing. Nobody and no pill is going to fix this or fix you... you have to fix you and start with fixing your body. Today.

So here's the damage...

4 Psychiatrists

5 Psychotherapists

Endocrinologist

3 Naturopathic Doctors

Internalist

Neurologist

Gastroentologist

2 Medical doctors (constantly until they hated me)

Allergist

30 rounds of TMS

30+ rounds of Hyperbaric treatment

6-8 NAD IV sessions (can't fully remember)

5 Ketamine infusions (possibly 4 can't remember)

3 psychotropic medications (none I could take for more than a few days to 2 weeks max) and I won't list them here because I did this early on when I didn't know what was going on and they were setbacks. This is 3 out of the 12 I tried before I knew I was going through withdrawal /  interdose withdrawal and thought I was going insane. Of course in the beginning of protracted withdrawal you don't know what to do and will basically believe in / try anything that has the slightest possiblity of hope.

$10K+ worth of vitamins, supplements, peptides, etc... you name it, I tried it. If it was listed on this board as a possibility it went into my body.

Flew to Ecuador for Ayahuasca

Flew to a Mexico clinic for Ibogaine

Full LSD trip x 1 long ass bike ride

4 hero dose mushroom trips as prescribed through a modality I found online

...I do not recommend or condone the above pyschedelic protocols in any way, shape, or form.

Massage, Reiki, Qi Gong, yoga, etc.. I tried them all

Meditation in several different forms

Expensive multi discipline psychotherapy clinic for two weeks

Expensive addiction centre for 2 weeks until I figured out they had no clue and came home

30+ blood tests

4 MRI's

ECG x 2

EEG x 2

Ultrasound x 3

...and more. I just don't remember everything but you can go back in my posts and see how desperately sick I was; especially in the first couple of years.

I basically scared the shit out of myself to the point where I would do or try anything. Alot of my savings; upwards to $60-70K CAD (do not do this!!) was spent on trying to get better. I was always keeping something in front of me that might help... in a way that probably kept me alive. So if that's keeping you going then keep at it. Some things that I've tried have worked for some people... so you never know what that looks like for you. Whatever it takes really at this point.

There may have been a compounding effect with some of the protocols I tried but I cannot tie any specific healing to one modality, protocol, or substance. What I can tell you is that in my fourth year I decided to try TRT again. I had tried this earlier on in my protracted withdrawal but couldn't manage it. I knew this was a problem after all of my blood tests and probably part of the reason I sought out medical help in the first place (and the flurry of psychotropic meds that followed starting with Benzos). That and stress from a very difficult career, poor diet, cigarette smoking (which I quit in my 4th year), and just generally not taking good care of myself that well. Some people need to take care of themselves better than others because of genetics and / or diet intolerances and allergies. I don't believe in Depression / Mental illness as labels... through much research over the years I believe that we become ill from environmental, genetic, and self-induced physiological challenges which manifest into mental illness; anxiety and depression.

Fix yourself!!! Do it now.. now is the time!! Today... stop f*cking around with your life. You are sick so control the things you can at this point... diet has to be one of them. Exercise might be harder at the moment but make it happen in some way, shape, or form. Learn, read, research... get your brain firing when you can manage it. Find out what food you are intollerant or allergic to and get rid of them immediately. Go through your cupboards and throw out all of the crap. Do this today. You may not enjoy doing anything at this point or for a long time but so be it... it gets done anyway. Every single day without fail.

I can say that with my hormone levels better balanced, I feel better. But I could not handle TRT while I was in protracted withdrawal so I had to wait until I was somewhat functional to give it a go again. If you go down this path, it is for life so make sure you don't want to have any children (men). Always consult with a medical doctor in this regard.

What's left...

- some low grade very manageable depression (still seeing a psychotherapist talk therapy - everyone, sick or not, should do this if they can manage it).

- a little performance anxiety and still kind of unsure of myself because I was so sick for so long

- some PTSD ...who wouldn't

- tinnitus; it's low grade but it's there everyday in it's varying degrees of annoying and probably will be for life - thanks doc!

- the odd wave / head pain (my worst symptom) / down day every couple of weeks

- anger and impatience... this is on me to channel and to fix at this point

What else can I say... I could probably write more but I won't. It's alot and I used to be jealous of people writing success stories but they did give me some hope that one day I might be able to write my own... and here it is in all of it's silent glory to be viewed by a forgotten underground community of really sick people trying to help eachother survive because nobody else will. Thank god (if there is one) for that at least.

When you get through.. and you will get through this, you will become wiser and more compassionate. You will have empathy but you may become angry and impatient. I chalk this up to being in a physical and mental prison for years on end. Not everyone will have to endure this as long or as terrible as I did and some may have to endure longer and harder. My story will most likely not be your story and don't be afraid if you don't heal within the same timeframe as people you have watched come and go here. Keep going... it will get easier (I hated when people said that here - sorry) and it will end. Get your thyroid checked, get your hormones checked, get all of your bloodwork updated and demand it from your doctor. A full workup blood panel once or twice a year if you can manage it until you're better.

At the end of this all you might be a better person for it as some have written here... but truth be told, I still wish I took the blue pill instead of the red pill (or most definitely no pills) and avoided this walk through hell as I'm sure many here can attest to. I still can't believe this happened to me... but it did and I carried on and I pushed through it minute by minute hour by hour day by day month by month year by year. Even when I couldn't, even when I had absolutely no hope, even when I thought about that button ever single day, I distracted, I endured ...as you must. You are stronger than you think you are.

Someone posted this on the board many moons ago... I sobbed when I read it then and I have tears when I read it now. It stuck with me through my journey and I read it many times when I was suffering and wanted to push that button... Don't give up. It will end.

 

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.

Good men, the last wave by, crying how bright

Their frail deeds might have danced in a green bay,

Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,

And learn, too late, they grieved it on its way,

Do not go gentle into that good night.

Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay,

Rage, rage against the dying of the light.

And you, my father, there on the sad height,

Curse, bless, me now with your fierce tears, I pray.

Do not go gentle into that good night.

Rage, rage against the dying of the light.

~Dylan Thomas

Thank you. I’m a 43 year old male almost 14 months into a Ct of a decade pulse script of clonazepam .5. I feel as though I’ve lost my life. Just lost my job and man…I won’t lay it all out to try to get someone to validate my horrendous symptoms.. I just wanted to say thank you. I’ve cleaned up my diet and had blood work done a few times, been to every doc and then some. Constantly feel like there is something I need to do to get better or something I’m doing wrong! I guess it’s the nature of this insanity and us as humans. Thank you again for your story. I hope I can make it through. Every day seems harder and harder.

Thank you so much ❤️