Author Topic: 2nd success story at 12 months - life just gets better  (Read 14459 times)

[Buddie]

2nd success story at 12 months - life just gets better
« on: June 25, 2018, 09:50:02 pm »
I am writing this second success story as a follow up to my original success story posted on Christmas Eve 2017 – when I was about 27 weeks off the meds.  I am including the link.  That story went into a ton of detail about what led up to being given z drugs and benzos.  I don’t want to repeat any of that as you can read the original post.  I know this is extremely long but it’s based on the vast number of emails and questions I’ve received – so – I hope in posting this I can help many people rather than one or two.   I definitely apologize if I seem insensitive  - that is not my intention but I was raised in a strict german household and “warm and fuzzy” is not natural to me – I wish it were!  I would not still be in BB trying to help people if I was a jerk and didn’t care – it’s just my style is a little abrupt perhaps.

Original success story at around 6 months:
http://www.benzobuddies.org/forum/index.php?topic=194324.0

I have hit my 1 year anniversary off benzos/zdrugs (June 23, 2018!!!) and life just keeps getting better.  If only I had been able to have a champagne toast – alas – I have remained clear of alcohol – just not willing to risk my recovery at this point.  Perhaps by the 2 year mark I will be giving it a try again.  I have hung around 6 months following my recovery in attempt to help people but my life is so busy now that I need to move on – I lost out on so much these last few years – that I have much to make up for – I want to share all of this in the event it helps even one person suffering from the nightmare benzo withdrawal causes.  After this – I will be dropping off BB for the most part - I need to move forward and close this chapter of my life.   I have not suffered all the ups and downs and set backs other people report once I was mainly healed at the 6 month mark – I think because I followed such a strict regimen based on my extensive knowledge of physiology and the endocrine system.   I am a highly educated, published scientist who has spent 20 years in new drug development for oncology medications.  I wish I had understood the dangers of z-drugs and benzos – they are given out like candy – so I never really researched them.    I am not saying a wave may not come but given my current clinical condition and my labs showing everything is back in balance across the board – I feel pretty confident the worse is behind me.   When I first realized I was in withdrawal – I had hoped to “outsmart” it using science but the more I researched it – the more I realized there is going to be a period of pretty extreme suffering that just cannot be avoided or lessened.  If you have found a way to reduce symptoms early on – you’ve probably only found a temporary bandaid that will eventually stop working….. I decided I’d rather get the suffering over with and not mess with my recovery.  That said -  I believe I used science to find a way to reduce the overall time of suffering.

My history of medication use is a bit complicated over these last 6 years– I actually went back to CVS pharmacy after posting my first success story to confirm the length of use and was surprised it was longer than I had recalled.   I had a long fight with lymes about 7 years ago and that led to my initial use of z-drugs for sleep.   I had also tried an anti-depressant briefly for somewhere between 4-6 months and had such a bad withdrawal that I was put on 3 months medical disability.  At the time I didn’t connect the two.  Anyway – it was about 6 years use of nightly z-drug use – often at the highest doses.  When those stopped working – many other things were tried – I found the drawer of “failed meds” when I moved and was shocked at all that I had tried – and never connected pretty bad withdrawals following them – things like Remeron, Seroquel, Mirtazepine, Restoril, Klonopin, Gabapentin, you name it – in addition to things like lunesta, ambien and sonata – some of these were z-drugs, some were benzos.   I was convinced I had MS because of how episodic these health nightmares were – I’d be totally debilitated for weeks/months and then fine for weeks / months – now I realize it was different trials of these terrible meds that caused so much hell for 6 years.

Eventually I ended up on a combo of Zaleplon (sonata) and Ativan-  the Ativan being used only once every 2nd or 3rd [...] since I knew it was addictive.   What I didn’t realize was that I was constantly kindling my brain in doing so and always in interdose withdrawal.  I used this combo for close to 3 years.  Oddly – I never craved the Ativan or thought about it – never took more than prescribed – so  - I was never addicted to it but obviously physically dependent.

The kicker came when I needed major spine surgery – I had 2 broken discs –that had to be removed and replaced with a large chunk of hip bone – I have a 3 inch plate and 6 screws in my neck and had to wear a hard collar brace for 12 weeks. – in other words – not a minimally invasive procedure.  They gave me 30mg valium daily for a few weeks with zero instructions for a taper.  I did my own short taper.  I only weighed 140 pounds at nearly 6 ft tall – so – that was a hell of a dose.   Several weeks after stopping the valium things went into a tail spin – which I won’t recount since it’s in the 1st success story.   I never took opioids or anything for the pain from my broken neck – the spine surgeon said he had never seen anyone with that kind of spine damage not on prescription pain meds – but I was a busy, traveling executive and couldn’t afford the side effects of pain medication – and knew all about the addiction issues.  Funny that I was so concerned about opioids and had no idea about benzos….   I have a very high threshold for pain and discomfort but what followed in valium withdrawal – there are honestly no adjectives strong enough to describe it.

The symptoms became so severe I developed significant cardiac arrthymias.  I’m not talking some random PVCs or palpitations – major a-fib 80% of the day.  This went on for months as doctors threw every med at it – but I couldn’t tolerate any of the meds because I was in such superior physical condition prior to this that my blood pressure is 90/70 and pulse in the low 50s and the cardiac meds were making me pass out…..  after the first cardiac surgery failed – I opted to go on valium again– thinking it would help  - not realizing all of what was happening was withdrawal from it.   It was not an active decision to “reinstate” because I had no idea I was in withdrawal.   I often wonder how different life would have been had I not reinstated – as I was probably through the worst of it – but unfortunately – I didn’t know that.

Starting the valium again at 10mg didn’t provide much relief at all – I had my 2nd cardiac surgery- which was a success and then I decided to stop the valium again – cold turkey off 10mg – this is when all hell broke loose and I finally connected all the dots.   I then developed a new cardiac arrthymia – the doctors did their best to try to force me onto propranolol – telling me my life was at stake – but I refused to take it.   I knew it was only a band-aid and would mask any ability to assess my healing. 

I am reposting the massive list of symptoms from my first success story – and I know this list isn’t even complete – I tried to record as much as possible but I was so incoherent at times it was difficult to be thorough:
DP/DR - about 6 weeks
Insomnia - lasted 4.5 months with 3 occasions of going 6 consecutive days with ZERO sleep, when I did - it was never more than 2 hours
Panic Attacks - severe and often - 6 weeks
Hallucinations - 6 weeks
Anxiety - non stop 4.5 months
Akathesia - non stop - 4.5 months
Extreme pain - everywhere – even worse than the broken neck pain
Myoclonal jerks - 4 months
Seizures - 2 months
Paranoia - 8 weeks
Rage - episodic over 4 months
Difficulty speaking - several weeks
Inability to process information – 4 months
Poor memory – 4 months
Frequent urination - 3 months
Metallic taste in mouth  - 6 weeks
Dry mouth – on and off for 5 months
Ear issues - at times felt clogged, at times felt like hot liquid was dripping out of them
Internal Vibrations - on and off 5 months
Breathing trouble - felt like I would stop breathing or had to manually breathe – like the reflex to breathe was totally absent - 8 weeks
Feeling "strangled" like my throat was closing and couldn't swallow easily - 8 weeks
Weight loss - massive - 20 lbs - became a skeleton - 4 months
Diarrhea - a few weeks
Brain Zaps - felt like blood vessels were rupturing in my brain - 8 weeks
Migraines - severe severe headaches - 8 weeks
Sharp chest pain - deep sharp pain - 8 weeks
Shortness of breath - 12 weeks
Tight / hacking cough - 3 months
Sharp neck/shoulder pain - 4.5 months
Clenching of hands, feet, jaw - 4.5 months
Hypoglycemia - 4 months
Numbness in my face, hands, feet - on and off 4 months
Hair loss - 50% lost over 5 months
Acne - SEVERE cystic, disfiguring - 5 months
Lack of appetite - 4 months
Sensitivity to light / sound / smell- 4 months
Irrational FEAR of everything - 4 months
OCD behavior - 4 months
High Blood pressure / Low Blood pressure - swung to extremes of high and low - 4 months
Agoraphobia - SEVERE - 4.5 months
Sweating - excessive or not at all  - 4.5 months
Heat / sun intolerance - 4.5 months
Deep DESPAIR / depression / suicidality- on and off 4.5 months
Emotional numbness – 6 weeks
Difficulty concentrating / focusing - 4.5 months
Weakness - 4.5 months
Dizziness / Vertigo - 4.5 months
Blurry vision - 5 months
Floaters / Visual issues - 4 months
Tachycardia - this was the most upsetting to me after 2 cardiac surgeries - 6 months
Food intolerance - 6 months - still a few present
Itching – didn’t start until month 4 – lasted a short time since I found a resolution
Tinnitus  - high pitched whistle -  24/7 for first 11 months – nearly gone at 12 months
Rapid aging - i went from looking 10 years younger than my age to 30 yrs older...... thankfully - this did reverse but not without vitamins – see section on aging below

At the time I posted my 1st success story I was still having mild pain / muscle tension, constant high pitch tinnitus in both ears and on/off insomnia – but I was fully functional and back to my corporate career, working out and social life.

I continued on my strict regimen and things only got better and better.  At 1 year off – the pain and muscle tension are gone, I have a bad [...] sleep here and there but many nights I sleep 8-10 hours and the tinnitus is almost gone – its gone at least 80% of the time – progress with that started around month 11.    I can say since month 6 – there are days where I can feel adjustments happening in my body and brain – I can’t think of any other way to describe it – but I never panic.   This is where mindset is so important – I could easily freak out and say – oh my god – it’s a wave coming but I remain calm – stay focused on all the great things in life – and I have not had any set backs.

If you follow any of my posts – you will see how much I emphasize the power of the brain.   The brain / placebo effect – has routinely beaten opioids in clinical trials.  If you believe you can heal – it goes a long way.  Most of the major oncology clinics in the US have implemented programs around harnessing the power of the brain.   When you are in the depths of hell – its hard to grasp this but if you post day after day – “I am making zero progress”  or “I think I’m permanently damaged” – this is the messaging your brain is receiving and you will heal much more slowly,  I cannot emphasize that enough.  It may sound like tough love but I have walked the walk and understand the utter horrors and I got through it by understanding the power of the brain.  Please understand that I am not saying what is happening isn’t “real” – it is – but how you respond to it – will make a HUGE difference.   I used to be a person who saw the cup as HALF EMPTY but 7 years ago when I first got sick – I read the books The Secret and The Power and realized how much our daily thoughts impact our lives.  At that time – I switched to believing the cup is HALF FULL and it has made all the difference in managing life’s challenges.   That said - all the power of positive thinking most likely cannot overcome certain deficits - what I am saying - is a positive attitude will carry you a long way but it may need to be in combination with some other things.   For me - a positive attitude has helped with just about every challenge but when i was tanking despite it - that is when i decided to get the micronutrient testing done - I already suspected stopping my vitamins was having a negative impact but the testing not only verified it but made me realize my body was fighting a losing battle without the key building blocks to heal.   All of the information below supports that theory.  If you've had a positive attitude for months (not days or even weeks) with no progress - I would really be looking to nutrition, genetics or hormone imbalances for additional insight.

Like almost any of us – I had “my story” locked down as to why I wasn’t going to heal.  My body was weak from years of fighting lymes, SIBO, chronic insomnia and injuries.  My body had been through a major spine surgery and 2 major cardiac surgeries – clearly my body was going to be too weak to beat this.  Plus i had cold turkeyed off 30mg valium first and then a 2nd cold turkey off 10mg valium and all the years of kindling with the ativan.  That was my story and guess what – I quickly realized if this was my story – it wasn’t going to have a happy ending.  I also realized that I didn’t fight through all of that scary crap to be taken down by a prescription pill I took according to instructions.  Thank god I am a fighter.  Always have been and it served me well.  I can say all those other battles broke me down but this battle truly broke my spirit.  I had no idea how a person who had spent their life dedicated to helping others and being selfless – could be hit by this. I wish I had done my research before taking that first pill but I didn’t and now I was not about to let that beat me!

So – here is my list of things I did that I am 100% certain where huge contributors to my success:

General Strategy:
1. Eliminated all GLUTEN -  I have no allergy to gluten but given we know Glutamate is high in withdrawal, why add fuel to the fire?  I post about this all the time and people argue with me.  I just don’t understand why – the body is LOADED with glutamate in benzo withdrawal so every bite of gluten you consume is only worsening the imbalance.  Once your body heals – you can have gluten again. 
2.  Eliminated all DAIRY - I have no dairy allergy but dairy can be very inflammatory – again people fight me on this – but it’s pretty easy to eliminate dairy and you will be able to have it again once healed.
3.  I eliminated all High Histamine foods -  this was brutal as it cut out many things - but why add to the histamine imbalance – we are LOADED with histamine in withdrawal.  Anything “fermented” like probiotics, yogurt, bone broth, apple cider vinegar – that will all increase your histamine load. 
4.  I eliminated all neuro - inflammatory foods - see the link at the bottom of this post  - it's a long list and was tough but i did it. – It was a small sacrifice to speed up healing.
5.  I started taking food grade bentonite clay from day 1 - it heals the gut.  Most protocols for healing the gut are loaded with histamine and fermented foods / products – you can heal your gut without these
6.  I took a few doses of 5-HTP here and there when I got truly suicidal - I will never touch an AD again after my bad experience 7 yrs ago - so this was not an option – and please understand just like benzos alter the GABA receptors – ADs alter the serotonin receptors.  I understand this is a personal choice and don’t judge people who go this path – but i also see tons of people on these meds not healing and the side effects of these meds can be vast – so – it would be difficult to judge if your symptoms are side effects from the meds or if its benzo withdrawal.  If you are doing well on an AD – by all means stay on it.  I am not advising what one should do – I am just making sure everyone understands that they alter the brain.  We are all so outraged about being misled about benzos so just want to make sure people are informed about what ADs do. I know it is scary how severe the depression can get with this but its not “real” depression in the sense of cause and effect but rather a significant imbalance caused by benzo withdrawal – its something that will eventually pass as the brain rebalances.  When I knew I was no longer safe living alone because of the suicidality  - I moved in with relatives who could keep an eye on me.  They were so alarmed at how bad the depression was and I got screamed at MANY times to get on an AD and I refused – knowing it wasn’t the answer and I am so relieved I never went that path.  But I also know that sometimes it may be necessary if you feel your life is at risk.  Just realize eventually you will have to taper off it and endure another withdrawal.
7.  I sold my house - this took off the financial pressure and living alone was not good for me.  I moved in with family and while that has some challenges - being around people was helpful.  People have commented on this decision – it took me a while to make it and I wish I had made it sooner.  The crazy thing is that I gained more responsibility by living with family – they didn’t “take care” of me  – I was assigned chores, cooking dinners, child care, etc., so now I had others to take care of – no one was catering to me and I don’t think they even really believed what was happening to me.  But having more responsibility helped me to keep moving.   I was raised in a tough german household where the answer was “suck it up” to everything.  I hated that but in the end – I think it kind of helped me despite how harsh that is.
8.  I focused on getting myself to being in a "neutral" mindset.  I could not find any way to be positive while going through such horror so just getting myself to a place where I did not dwell on my symptoms was key. 
9.  Distraction - everyone talks about this.  I didn't really get it until I found a trilogy of books to engage my time.  I couldn’t read and comprehend initially.  It was actually difficult and frustrating but I kept at it.  I just read the words even though they meant nothing to me.  Eventually things started to flow.  The brain needs to be used no matter how hard or frustrating it feels. I usually only read non fiction and these books were kind of ridiculous but they really got me through this  - in case you want to look into it – the first book is called A Discovery of Witches…. It’s a trilogy
10.  Found gratitude - this is not easy but you MUST find a way to focus on anything at all that is good.  I thanked myself every day for having the strength to endure what was happening to me.   Some people only have neurological symptoms, some only have physical.  If you fall into one of those groups – right there is something to be grateful for.  This is not a suffering contest but recognize that you could be hit with both physical and neurological symptoms – so – if you have one or the other and not both – that is something to be positive about.   One fellow warrior told me to keep a journal and that on bad days – go back and look over it – you WILL find something in it to see you have progressed – even if it doesn’t seem that way.
11.  Took vitamins to support healing -  when I went into withdrawal – I had been on lots of vitamins I started from my lymes days.  I stopped them all because there were so many posts about them being harmful – as it turns out – when I stopped them – that is when I got much worse……  the only 2 vitamins I’ve found to be a problem for me are magnesium – it acts on GABA so this makes sense and Vitamin D – as it turns out that increases histamine – so also makes sense.  But the rest were ok.  I have taken NO supplements that act on GABA in any way.  Be sure to do your research – so many of them do – like theanine, holy basil, passionflower, relora, valerian, etc.,  so – I never took any of them.  Remember alcohol also acts on GABA – I cut alcohol nearly a year ago when the cardiac stuff started and won’t resume it for a while.  I see so many posts from people regretting trying alcohol – its just not worth the risk.  I’ve had a “sip” of wine or beer here and there but that’s it.  I recently had barbeque ribs at a family party and had a terrible reaction to it only to find out my brother in law had put in a TON of bourbon in the sauce….. that shows you how sensitive we are for a long time!
12.  I started neurofeedback after month 6  - I couldn’t have done it any sooner because the agoraphobia was so severe and I wasn’t well enough to drive anyway.  Its expensive and insurance doesn’t cover it – so as an alternative – I recommend www.brainsync.com   they offer a buy 3 get 1 free package on MP3 files for $30 – I used Brain Power which balances all the frequencies – in withdrawal – we dominate with high beta which is so tough – this will balance things out over time.  I used Pure Focus – which allowed me to resume working – I had lost all motivation and this allowed me to get going.  I used Relieve Anxiety at [...] which allowed my body to calm down and get off to sleep and then there are other files I’ve tried for a variety of reasons.

Nutrition / Daily Meal Plan:
People ask me for my meal plan – so – here it is – I ate this way for 6 months.  After that – I gradually started adding things back in – now I can eat whatever I want but that wasn’t until about month 8 or so.  I took baby steps back into adding other things –you can’t go from this to eating junk and expect things to be ok.  People still email me and ask what I ate – I am not kidding – below is exactly what I ate – nothing more – it was a very limited list:

Breakfast – plain steel cut oatmeal made with unsweetened almond milk
Late morning snack - and apple or banana or a carrot
Lunch - salmon, chicken or fish  with white rice and some kind of veggie like broccoli zucchini or cauliflower - steamed or sautéed in olive oil
Late afternoon snack - large bowl of kale with olive oil and sea salt
Dinner - salmon , chicken, fish or steak with a sweet potato and some kind of veggie like broccoli zucchini or cauliflower  - steamed or sautéed in olive oil

Around month 4.5 I added protein shakes back in to help with the weight loss and a few other gluten free carb-like items.  I did feel a little revved the first few shakes but then the reaction passed.  I had developed a huge fear of food and at some point I was down to 118 pounds at nearly 6 ft tall so had to push through that fear – if it wasn’t processed, gluten, dairy or high histamine/sugar – I ate it and pushed through.  If you live in the US – most super markets have a huge gluten free section now.  Udi’s bagels are truly yummy – are they as good as a regular bagel – no – but I didn’t feel “deprived”.  A lot of our reactions in benzo withdrawal are psychosomatic.  Again this sounds like tough love but it’s the truth and once I came to understand that – my healing progressed because I didn’t give into the fear.  I totally understand the fear – I was terrified of everything but had I remained paralyzed by that – I never could have made progress.  I’m not saying there aren’t reactions to food – there definitely are – but you have to try to reason through it.  So many things are going on during withdrawal – you can easily make a false connection / association between things that are happening.  Had I given into my fear of food – I would have been left with eating cucumbers…… that is how bad the fear got – but I had to force my way through it.   I missed things like honey and vanilla flavoring in the worst way but I wasn’t willing to stray from the strict plan until I had been healed several months.

I also need to emphasize – if you were eating processed food and you suddenly switch to something like this – you are likely going to feel worse.  This is because your body has candida in it  (this is natural / normal – nothing to be alarmed about) and by giving up processed, sugar based foods – the candida is going to start to starve and die – this will release lots of toxins into your body making you feel worse.  IF you haven’t yet started to taper – maybe consider going to a healthy diet first. In any event – you may suffer for a while – there are things like l-ornithine or milk thistle that can help the liver deal with the toxins…..  I was fortunate that I ate a very clean diet for 20 years – so – my body didn’t need to detox out bad stuff.

I see tons of people posting things like – I ate at a chinese restaurant and I feel terrible – yes – that is because there is MSG in it and soy, etc.  look at the very end of this post for the list of neurotoxic foods…… all fast food has MSG – that is the only way to preserve cooking in bulk….. and I suspect most places that say they are MSG free really aren’t…..  and any fast food has tons and tons of other bad things in it.  Frankly – anything that comes out of a box has something in it that will bother a benzo brain.

Vitamins / Supplements:   First – please use some caution with vitamins – your body is highly distressed and sensitive – so throwing high doses of anything at it without easing in will be a mistake.   You can buy empty capsules on websites like amazon to divide capsules into 1/3 or ½ to ease in.  or cut tablets into quarters or halves.  I did this with everything and worked my way up to full doses.

Bentonite Clay - 5 capsules daily - away from food and my supplements and thyroid medications
Potassium - 99mg - two times a day with breakfast and dinner
Vitamin C - 500mg – up to three times a day with each main meal
Vitex (perimenopause hormone balance) - 225mg - once in the morning before 830am for best effect
Hydroxy-Adeno B-12 (specific for people with MTHFR gene defect) – Seeking Health brand – I started with only a ¼ tablet and worked my way up to ½ tablet
Folinic Acid (specific for people with MTHFR gene defect) – Seeking Health brand - - I take ½ tablet – Folinic is VERY different than folate – many European countries have banned folate but it’s in so many vitamins in the US – so be cautious
CoQ10 (as Ubiquinol  Jarrows brand) – twice a day – once in morning and evening
Omega 3 Nordic Naturals - at lunch
Lycopene - 20mg – NOW brand - morning and evening - stopped the acne pretty darn fast
B-2 – 100mg – NOW brand - morning
GTF Chromium (solaray brand) –200mcg -  with breakfast and dinner - this helped regulate blood sugar swings
Benfotiamine - 150mg - morning and evening - helps neuropathic pain and circulation
Astragalus – NOW brand - 500mg - afternoon - stopped the itching and rash dead in its tracks
P5P (activated form for people with MTHFR) – Seeking Health brand - 25 mg - afternoon
Pantethine (activated B5 for people with MTHFR) – NOW brand 450mg – morning – heals adrenals
Zinc/copper combo – Jarrows brand - 15mg/1mg - in afternoon and evening
Vitamin E - 400 IU – in afternoon and evening
Super K - evening
Vitamin D - added back in after month 6 once lab testing showed i had low levels – I realized my prior supplement was just too large a dose at 5000 IU and I switched to Solgar brand – 1000 IU and was fine – I felt a little revved first few doses and then it settled down

People will always post negative comments when I talk about vitamins – asking for the “evidence” that they work – the fact is – running clinical trials costs millions, yes, millions of dollars and vitamins cannot be patented – so – no company is going to run trials as they will spend a fortune with no possible financial returns.  However – if you go on support pages for many chronic illnesses – you will see how well people start to do with the right vitamins.  As I’ve mentioned- I had micronutrient testing which proved I was highly deficient in a lot of key vitamins – this makes sense because the gut is so damaged during withdrawal – and remember – I was eating an extremely nutritious diet so those who are eating garbage are probably even more deficient.   As I also said – please ease in – the amounts I’ve listed – I worked up to – often starting with a ¼ or ½ dose.  Often – I felt a little revved with the first few doses but I pushed through since I knew my body needed it and I was fine.  Is this also the placebo effect?  perhaps but I have labs that were sky high - i took a vitamin "known" to help and the levels normalized.  That is all the evidence I need..... I fully understand if you want more but you won't find it - the studies just aren't done.   Doctors will say you can get all your daily needs from food - yet we are the most "ill" as a society than we've ever been  - rates of obesity, diabetes and cancer are growing each year......  The life expectancy has actually begun to reverse....

Other topics I get asked about:

SLEEP -  there really was no sleep for many months.  Three times I went 6 consecutive days with zero sleep.  Doctors will tell you that is not possible but it absolutely is and it will not kill you.  There is so much adrenaline and glutamate surging through the body that sometimes you simply cannot sleep.  I also had testing done and found out my body was producing ZERO melatonin.  Benzo use can actually stop the body from making its own melatonin.    In month 1 off benzos I got 12 hours sleep total.  In month 2 I got about 20 hours sleep total.   This went on for 4.5 months.    It wasn’t until 4.5 months that I got my first 4 hours of sleep.  At some point I got desperate and took a combination of something called Herbatonin which is a very low dose plant based melatonin – 0.3mg in combination with Benadryl – and for 2 weeks – I slept like a rock 8-10 hours per day – then it stopped working.  Oddly – I actually felt worse when sleep came.  I am not sure why other than that the body starts to calm down and all that adrenaline that was keeping you functioning starts to dissipate so you actually feel worse.   Most melatonin supplements are sold in 3mg / 5mg doses –this is much too strong and I even tried a 0.3mg melatonin and had a terrible reaction to it – I think synthetic melatonin may be too harsh in withdrawal but this plant based form I found worked well.  I’ve used it on and off and have had great results.  Sleep deprivation is one of the worst things in this whole mess.  I was physically shaking all the time from lack of sleep and weakness – but I still healed despite practically no sleep.    The reason I started z drugs and benzos were for sleep – so – I suspected sleep was going to be pretty hard to come by.   If I had done all the research 7 years ago that I did once in withdrawal – I probably never would have needed these meds.   The brain needs to be able to calm down to sleep yet I was on my laptop from 6am till 11pm daily and often had it in my bed with me. The brain is very overstimulated in withdrawal so it’s going to take a long while before it settles down.   I see people posting complaints about sleeping 4-5 hours – and I would laugh because I didn’t even get a few minutes early on.  If you are sleeping that much – sleep will definitely be coming back.  And it will go up and down.  There was a point where I regained sleep only to lose it twice thereafter.  That really was a tough one.  I did find things here and there that helped a little although nothing helped prior to the 4.5 month mark - like a weighted blanket, the brain sync files for calming my brain down enough to drift off to sleep, at some point i switched to sleeping on the couch rather than my bed and that made the most difference - i think my brain associated the bed with terror..... after several months of decent sleep on the couch i transitioned back to my bed successfully.

People kept telling me the more I focused on no sleep – the worse it would be – and that was so true.  At some point I just accepted there would be no sleep.   I was too sick to work or drive so not sleeping didn’t really matter…… I firmly believe the more you stress about no sleep – the worse it will get.    The more you experiment with substances for sleep  - the less likely you will truly heal – you will just find a temporary band-aid.   That said – I am a corporate traveler and I do resort to taking calms forte as needed as well as the Herbatonin  - its homeopathic and can get me to sleep in a hotel as needed but I didn’t try that until after my sleep had returned.

ANXIETY / PANIC -/ AKATHESIA -  there was no relief from this either.  I wasn’t willing to take anything that could hit GABA receptors.  I see so many people experimenting with things and they seem to not be getting better or have set backs.  The brain cannot heal if you are taking anything hitting GABA receptors.  The reason the brain heals once you are off benzos is that the receptors start to regenerate and the feedback loops get going again – if you are confusing the brain with adding GABA type supplements into the mix – the brain won’t start the healing process.   I know that sounds daunting to hear but I am glad I endured the hell and kept the blind faith going that healing was happening.  People have said to me that my symptoms couldn’t have been that bad if I endured them but I haven’t found many success stories that describe symptoms worse than what I had.  It was beyond severe – there are no adjectives that will ever capture how awful it was.  There was absolutely no signs that healing was happening but I endured each day – and I came out the other side healed – without fear of additional waves from a “bandaid” supplement that will hit tolerance or stop working.  Often many times per day I would have to put a pillow over my face and just scream into it – the akathesia was so bad.  I would beat my couch with my hands – to try to get the pent up energy out.  I was one of the unfortunate people who found exercise made things worse so I had no way of releasing the horrible feeling of bursting out of my skin.  It is a hell I wouldn’t wish on my worst enemy.    I tried deep breathing and meditation.  In the early months – there was just no relief at all.  Later by month 5 – things started to improve a little with things like deep breathing and meditation.  I really thought I was going to go insane from these particular symptoms yet I healed.

EXERCISE
This was tough – I went from working out 6 days a week to being totally incapacitated.  I kept reading how exercise was key to healing yet each time I tried – I only got worse.  I urge everyone – no matter how weak you feel – you have to keep moving.  I set my alarm every 4 hours to force myself to get up and walk a lap around the house and go up and down 1 flight of stairs.  I would have to sit at the top of the stairs – I would nearly black out and was dizzy.  But you can’t stop moving.  Around 4.5 month I was able to do 0.25 miles on the treadmill.  I did that for 2 weeks and then pushed to 0.5 miles and gradually increased – at a year – I can do 5 miles with steep inclines.   Moving – even a little – will help.   Don’t push if exercise is setting off adrenaline surges as that will set you back.  The surges came hours later – not immediately so it took me a little while to make the connection. I was so worried I wouldn’t heal because I couldn’t exercise but I did.

OTHER DIAGNOSES:   I don’t blame anyone from seeking out medical assistance or an explanation for their suffering.  When I was in withdrawal round 1 from the valium I had no idea that that is what was going on – I saw gastroenterologists, rheumatologists, neurologists, endocrinologists, cardiologists, you name it.   Then I made the mistake of seeking out these functional / integrative medicine docs – who – normally – I suspect actually do help people but most of what they are going to recommend – will prevent healing or worsen the situation.  Most will heavily rely on things like magnesium, adrenal protocols that involve things like ashwagandha, theanine, glycine, taurine, holy basil, passion flower, etc.,   you may find relief in trying these things but you have only traded a cheap prescription problem for a more expensive supplement problem.  Worse yet – while you are desperately seeking relief – you are only prolonging the suffering because your brain cannot reset and heal itself.

In any event – I went to a series of these types of docs- paid a fortune as they often don’t take insurance – I got diagnoses like SIBO, candida, parasites, heavy metal poisoning, dysautonomia.     It’s likely everyone in withdrawal may have any of these issues because of the significant gut injury caused by any CNS med – but trying to treat those things in withdrawal is a slippery slope.  Killing anything causes a release of toxins in the body that your heavily taxed liver likely can’t handle.  They will try to convince you that this is why you are so sick.  If you were not having any issues before benzo withdrawal – then none of these things are the cause of the severe symptoms you are facing and not treating them isn’t going to hurt you or prevent healing.   I actually did have SIBO from years of lymes treatment – positive breath test – I waited until I was fully healed to treat it and boy am I glad I did because it knocked me on my ass for a month and the few lingering symptoms I had from withdrawal – like tinnitus – less than stellar sleep – mild pain/muscle tension – none of those symptoms resolved after the SIBO breath test came up negative.  I spent $1000 out of pocket on 2 rounds of Xifaxin to treat the SIBO – I am sure I am better off for having treated it but there was no tangible improvement.    I am also concerned a lot of people are being given a lymes diagnosis without a positive lymes test.  IF you’ve had a western blot test and it was negative – then you likely don’t have lymes, you need a western blot, not the ELISA.  We are a world of people being given tons and tons of psychiatric meds and I honestly believe that most “lab negative cases of lymes”  - are people on a benzo or AD who have hit tolerance …… worse yet – many people with lymes are given z drugs and benzos – and then get into this loop of thinking they have chronic lymes when its really tolerance  / interdose withdrawal from the meds they were given for sleep / muscle tension– I can say this because its exactly what happened to me.  I felt great after my lymes infection was treated and then a few short months later I felt terrible and it was because I had been put on a z drug and gabapentin, etc.,  now I can look back at a 6 year long health battle and realize it was these horrible meds all along.   I am doing awesome today – in the best health I’ve been in a long time and I have no fear about further health issues coming……

POTS - i developed this and it took quite a while to resolve - its all coming from the adrenals - as they heal - the symptoms will improve .  My resting heart rate was around 90-100 for quite a while and when i stood up it went to 130-160..... it was terrible.  i couldnt tolerate the sun or heat.  please try your best to avoid heat -- including hot showers.  this opens and dilates the blood vessels which makes everything worse .  in fact - if you can tolerate getting into a cold shower a few times a day - it really helps.   my vitamin schedule helped heal the POTS as well.

WORKING - i wonder about this  - i had to stop working because of the type of work i do.  I make very difficult compliance decisions for some of the biggest companies in the world - I am required to carry a 2 million dollar liability insurance policy - that is how high the stakes are - so - i couldnt risk making  a mistake as i had no memory or cognitive abilities for a while.  I suspect not working took strain off the adrenals but created a different stress - a financial one - since i had no disability coverage.  Maybe working helps keep your mind distracted or maybe work creates too much strain.  i'd say if you are able - probably stopping work for some period of time helps in some way - as long as you aren't going to spend the extra time worrying about horrible things.  As soon as i was even remotely able - which was around month 5 - i was able to start working remotely again - i was still in no condition to be seen given how horrible i looked but by month 6 i was presentable and by month 7 i was back to normal work life and travel.

HORMONES -  women and men in their 40s are likely hit much harder in withdrawal because its an age where sex hormones are already starting to decline and dwindling progesterone or testosterone levels cause a host of problems.   Unfortunately, being on a benzo actually reduces our production of all hormones – my estrogen and progesterone levels were at menopausal levels in my final months on benzos.  6 months after stopping – I had the hormone level of a 25 year old again.  Unfortunately I had gone down the path of progesterone cream in the last few years prior to stopping benzos/z drugs – to help with frequent and heavy periods – it helped – but then I realized I had to discontinue it once I was in withdrawal – it was a tough decision and I often wondered if that made everything worse – and it probably did for a period of time but each time I tried to reintroduce it my anxiety and insomnia worsened as did the acne and hair loss…… it was doing the exact opposite of what it had once done -  thankfully I was not estrogen dominant – so – I didn’t have to manage that.  If you are on an AD – you are likely estrogen dominant or on your way there as ADs increase estrogen in both men and women which is why people gain weight on them……  if your P to E ratio is under 100 – you are estrogen dominant and may need to face trying to treat that with things like DIM or evening primrose oil, etc.,  Since I was not estrogen dominant – I used Vitex to try to help regulate my female hormones – however – nothing could stop the return of the heavy and frequent periods so I needed to go through an endometrial ablation – I had that done at 10 months out and I was terrified of a set back – I asked only for propofol for the procedure – no VERSED – it’s a benzo.    I had absolutely no issues after the procedure and thankfully – no more heavy / frequent periods.   As the body heals – it will likely get back to normal hormone production but people 40+ may need to seek some additional support to get things balanced again.

ADRENALS  - I learned a ton about healing adrenals when I had lymes.  I went undiagnosed for 2 years so during that time – my poor adrenals were in fight or flight trying to alert me to the fact that something was very wrong.  The reason I know I had it 2 years was that my new lymes doc pulled all my old lab tests and found a positive test….. my primary care doc missed it….. the state of PA now requires all labs to directly send a positive lymes test result to the patient and by pass the doctor who ordered it….. Anyway,  my  cortisol levels were 6 x upper limit of normal and I was given a diagnosis of Cushings.  Eventually it swung so low I was given Addisons disease diagnosis but I knew taking steroids was NOT the answer and so I didn’t go that path and I am very grateful I didn’t.   Please try to avoid steroids at all costs during withdrawal – if you use the search box you will see tons of posts about how people had horrific experiences from them – much like being “floxed”……   most of the protocols that heal the adrenals involve using GABA supplements so please be cautious.  There are ways to heal the adrenals without those.  Most importantly – using himalyan sea salt – up to ½ teaspoon morning and evening daily for many months along with potassium supplements in morning and evening – this will take the pressure off the adrenals to balance electrolytes  - the more your adrenals can rest – the better they will heal.  Another key supplement is vitamin C – this will both bring down cortisol and allow your progesterone or testosterone levels to recover.  I recommend twin labs crystalline 500mg capsules – start with only a half a capsule at [...] and work up to a full capsule and then even take one with each meal if you can   Zinc/copper are key for adrenal health and hormone production – at a minimum you should be taking 15mg zinc but you can take up to 50mg for 3-6 months if your adrenals are really shot.    You can try bovine adrenal replacement but that may be too harsh for some people. – I used Thorne Cortine a while back and even Wilson’s Adrenal supplement which is very potent but that was before I was in benzo withdrawal.    Also – pantethine – which is activated B-5 and Vitamin E  are important for adrenal health.  I would start with 300mg and then work up to 450 or 600mg with the B5 and take 400 IU of Vitamin E.  If your cortisol it pretty high – I would also consider trying something called Seriphos.   It can really help lower high cortisol levels and may even help you sleep or reduce anxiety as a result without a direct hit on the GABA receptors.

HAIR LOSS:
I think the hair loss comes from different things at different times.  It is definitely a scary symptom – I lost more than 50% of my hair over the course of a year – and since I have really long hair – it will take 2-3 years for it to recover…… I think in the beginning the loss comes from the body going into shock.  Any traumatic event can cause hair loss and likely the massive weight loss also contributes.  Then over time the hair loss becomes more hormonal – although my testosterone levels never went extraordinarily high – my levels were 5 times higher several months into withdrawal than early on – so – even though it was within range at times – it was still much higher than my body had been used to.  Benzos also suppress prolactin so over time that hormone may increase causing hair loss.  My thyroid also did all kinds of screwy things after being stable for years – so – that likely contributed too.    I experimented with a few things to try to help with it and nothing was overly great.  I will say black currant oil did help for a while.


ACNE:
I developed SEVERE cystic acne – and I had flawless skin most of my life.  I’m not talking about a few bad zits – I’m talking disfiguring acne to the point I was advised to go on accutane.    At times my skin and hair were loaded with oil to the point I needed to bathe every few hours.   This came from the dramatic increase in testosterone and likely from my declining progesterone levels from having to stop the progesterone cream.  Finally by month 5 it had stopped and I needed 3 plastic surgery grade chemical peels to fix the damage.  I thank god such technology exists as my skin was utterly destroyed.  At some point I did take minocycline to help because it was so severe – it revved me for a few days but then the reaction subsided.  I wouldn’t rush to antibiotics unless it truly gets disfiguring.


WEIGHT LOSS:
I went through a dramatic weight loss in about 2-3 weeks I lost nearly 20 pounds and that was with no reduction in calorie intake.   The body goes into a catabolic state and begins breaking down muscle and stealing nutrients from your bones and organs, etc.,   it is so crucial to ensure you are eating a nutritious diet and consuming a lot of water.   This is also why vitamins are so important.  I have eaten organic for 2 decades and never eat anything out of a box – yet micronutrient testing showed I was highly deplete in many vitamins and minerals.  Once I got back on good vitamins – I started to feel human again – I was so weak and dizzy until adding in the right nutrients.

RAPID AGING:
This was also very disturbing as I went from looking 10 years younger than my age to 20 years older than my age…… my skin sagged and my eyes bagged and I looked terrible.  After getting the results of the micronutrient testing – this all made sense as I had become extremely deplete in vitamin A, E, copper and a few other things that all have to do with collagen and keratin production.   Once I started supplementing with beta carotene to replace the A (straight vitamin A can be hard on the body so most naturopaths recommend beta carotene instead), vitamin E and copper – wow – what a turn around in a few weeks time.  I also recently added bamboo extract as it can help with the hair loss and aging issues.  I am back to looking 10 years younger than my age again ☺.

LAB TESTING:
I did lots of labs to track my progress,  Since I am trained in physiology and endocrinology – I was very reassured that my lab results both explained my symptoms as well as showed my progress over time.  I spent a lot of money on neurotransmitter testing once every  3 months and it was well worth it . In the beginning my glutamate levels were SKY HIGH and my GABA was zero.  I also learned my brain histamine levels were through the roof as were the catecholamines .  Even though I went gluten free – it wasn’t until month 6 that my levels finally came down. 

I had tons of weird lab results – like really high aldosterone – which explained the frequent and high volume of urine……  my Calcium levels were sky high despite having no dairy or sources of calcium – this is because glutamate increases calcium by opening the calcium channels….. so I would avoid supplementing with calcium for a while because that can really increase anxiety.    I also failed the dexamethasone suppression test twice – this should only happen if you have a pituitary tumor yet a CT scan with and without contrast was negative.  This shows you just how badly the body malfunctions during withdrawal.

I did 4 point cortisol testing a few times  - in the beginning – it was high around the clock.  For a long time my evening and [...] cortisol levels remained really high which didn’t help the insomnia but sure explained it.

I measured my female hormones and testosterone pretty often.  I also had to get thyroid testing done often – please please please be sure the person you are working with understands proper testing – you need Free T3 and free T4 in addition to TSH – my TSH went down to 0.25 – which of course looked hyper yet my T3/ T4 were hypo…… thank god I never reduced my thyroid medication on the false TSH signal – which is only a sign of pituitary malfunction.  It took till month 11 for this to resolve.

The human body is very smart and serum labs can be pretty inaccurate – I’ve had people say that their labs were all normal.  But the fact is if you ate food within 48 hours of testing – chances are – things like potassium will look normal. You would have to be severely ill for potassium to appear low.  Muscle cramping / tension is a common side effect of low potassium.   So- its worth trying – 99mg once a day or twice a day.  If you are having tachycardia – taking some potassium may help.  Also – while the test may be normal – your levels could have doubled or tripled from where they were – so while they are normal – they are high for what your body is used to.
There are plenty of online labs – in the US – where you can order your own neurotransmitter urine test kits or saliva 4 point cortisol test kits or saliva sex hormone test kits – if you have the money – it’s a great option – as I know so many people have asked their doctors to order these tests and the doctors won’t.   I had a friend who is a chiropractor and he kindly ordered most of the tests that traditional labs run.  Neurotransmitter testing is something traditional labs don’t do so you need to go through online lab sites for that regardless.  People asked me – what is the point of doing those – well – for me – it gave me peace of mind and explained the symptoms I was having and in some cases – when my serotonin was high – I actually found ways to lower it and when my serotonin swung low – I took a few doses of 5 HTP to get the feedback loop working again.   I also had very low dopamine and as it turns out – Vitex helps boost that – although not a supplement for men.  There are other ways to boost dopamine  - like gingko – which will also boost testosterone.

METABOLIC SYNDROME / DIGESTION

When I was in withdrawal round 1 from valium and everything was going terribly wrong – I had a lot of lab testing – one showed metabolic syndrome like issues – blood sugar/insulin regulation problems and high cholesterol – thankfully – since I have eaten a consistent – highly healthy diet for 2 decades and have routine blood work – I knew I never had these problems before – there was no way I suddenly had high cholesterol when I had made no change in diet and my cholesterol had always been low.  So – this is yet one more crazy thing the body does in withdrawal.   I got on GTF Chromium – 200mcg with breakfast and dinner and within a week – I felt sooooo much better – no more weakness / dizziness from blood sugar drops or spikes.   I also had my cholesterol retested several months later and it was back to being low. 

Initially I had pretty severe diarrhea but as soon as I got on the bentonite clay – it stabilized.   I was also experiencing severe deep heart burn like pain in my chest – again – made no sense since I had made no change in diet and never had heart burn before – the bentonite clay also corrected that.  I see so many people with digestive issues in this forum who get put on proton pump inhibitors – I would really try to avoid those – they screw with the gut and reducing acid is actually the last thing you want to do – it amazes me how ignorant doctors are – digestive issues mainly come from a lack of acid – not too much – which is why things like apple cider vinegar can help a lot – however – in withdrawal – histamine runs high so ACV can be counterproductive since its fermented and increases histamine.  The bentonite clay worked like a charm.   Be sure if you try this that you are getting food grade bentonite clay – as you cant consume the clay that people use for detox baths. 

NERVE PAIN –
this is a common issue in withdrawal – the nerve endings which were once soothed by benzos are now highly inflamed.   I added benfotiamine into my regimen – it’s a vitamin that helps with nerve pain and it helped. 

WEAKNESS –
very common -  riboflavin (B-2) can help a lot with this.  I went from barely being able to hold my arms up to having strength back.

GENETICS:
I had my genetics done years ago before 23 and me existed.  I learned I had quite a few mutations that can be pretty detrimental – MTHFR, MAO, COMT, CBS, DAO, HNMT, SHMT, Vtaq,  and many liver function mutations.   At the moment  23and me doesn’t seem to be testing for the MAO gene – I knew my MAO status from the genetic testing I had done years ago.   Before paying for 23andme – I’d call or email them to ask if they can run that test – otherwise – you really aren’t getting the full value.

 I suspect everyone in this forum has some key mutations – those without these likely can go on and off benzos with no problems.  It is very hard to find anyone that understands genetics – I taught myself a ton about it years ago and found I know more than any functional or integrative medicine doctor I’ve encountered.   Most understand it so little that they tell people they need methyl B-12 of methyfolate.  If you were not on these vitamins before withdrawal – I would not try them now – they are potent and will lead to a lot of detox and stimulation that your body likely can’t handle.   Hydroxy or adeno B-12 are more gently and folinic acid.   IF you are taking a multi vitamin that has folate in it – you are likely making things much worse for yourself if you have any of these mutations.

Things like the CBS SNP cause sulfur to accumulate and can lead to ammonia poisoning.  You can try something like l-ornithine or molybdenum – they are amino acids that can remove excess ammonia – and see if you feel better.

Each gene has a given set of symptoms and potential solutions.  I spent years researching this and it’s a matter of trial and error.   Our genes are what they are.  My mutations were all silent until I started messing around with these CNS meds and then that activated them.  They can be silenced and normal functioning can return with the right combo of supplements and/or low stress conditions.

People ask me questions about genes and “doubt” the information.   I get it – but understanding genetics is relatively new and it will probably be another 2 decades before things are much better understood.    If I were sick for 2+ years with no progress – I sure would be looking into genes and seeing what can be done as I suspect all the long term sufferers are in a situation where their genetics are impairing their ability to heal and with the right combo of things – they could start to recover.

FINAL THOUGHTS:
People ask me what was the “one thing” in my list of things I did that I thought helped the most.  The thing is – I don’t think one thing would have worked – my entire list of things I did was based on my strong knowledge of physiology and endocrinology.  My strategy addressed all the issues – the gut, hormones, imbalances, etc.,   If I had only done one or two of them – I don’t think I would have healed quickly.   I have gotten a bit tough with people on this site because I was so tired of people telling me “You are so lucky you healed so fast” – there was NO luck involved at all.  I developed a scientific strategy and followed it to a T.  It was a ton of sacrificed and suffering but I healed within 6 months.   People have said it was too extreme to follow my diet – it was extreme but by eliminating all the things that add to inflaming and imbalancing the brain – I healed.   Now at one year out – I can have anything I want and have no reactions.  While away on vacation this week I ate a huge stack of gluten laden blueberry pancakes slathered in syrup and had no reaction and enjoyed every moment.    Please realize in following the steps I outlined – there is no immediate relief.  People will email and say they tried it for 2 weeks and saw no progress so it doesn’t work.  I didn’t see any progress either in 2 weeks and not even in 2 months.  It was nearly 5 months before it all started to come together.

What has happened – really is a brain injury – much beyond withdrawal.   I personally believe the GABA receptors return somewhere between 3 and 6 months for all of us but then there is the period of time in which the pituitary and hypothalamus are rewiring and that causes tons of imbalances in hormones and other things which cause the “wave” like pattern.  I had 2 really bad waves following "acute" - they were actually worse than acute.  I definitely did not expect that.  IF this happens - don't think something is going wrong - it seems this is pretty normal from other posts I read.   If you read about Botox – it eliminates wrinkles – this lasts anywhere from 3-6 months for people.  Botox freezes muscles by killing the nerve endings that allow the muscle to flex.   Over time the nerve endings return and so do the wrinkles – this is an analogy to what happens with benzo..  Benzos put GABA in the brain – the brain says – oh – I don’t need to make any of this anymore and it stops.  Once the benzo is gone – the brain sees the absence and tries to make its own again and this can take a while.  Another analogy is birth control pills – when you go on them  - your body stops making its own hormones.  Once you stop the pill – the body goes into disarray for a few months but the body starts making its own hormones again.

Like everyone else – in the beginning I desperately sought answers to the “timeline” of when this would be over or when a certain symptom would abate.  From my spending 12 months in this forum – what is clear – is each person’s experience is entirely different and there is no way to predict timing.   Getting through withdrawal requires the most strength, determination, blind faith and patience you could possibly imagine.  I had no signs of progress for quite a while.  While withdrawal round 2 was nearly resolved at 5 months – you have to add the 3+ months of hell I went through in round 1 – so – it was 8+ months of hell that I cannot even describe.

I am sure you can find some of my early , desperate, hysteria- laden posts.   My life was in a tailspin.  I went from being an extremely smart, productive, good looking individual to being completely non functioning.  I went from working out 6 days a week and having a daily meditation practice to being able to do neither.  I read so many success stories that said healing was only possible with lots of exercise and meditation – yet I healed without either.  Each case is very different.  Each of us have different baseline levels of health, different genetics, etc.,   

I personally do not believe that length of use , strength of dose, type of benzo, etc have anything to do with the outcome and length of time you will suffer.  I’ve seen people on these meds for 2 weeks suffer 1+ year and I’ve seen people on these meds for 20 years heal in 6 months…..  My brain was pretty screwed – I had a 6+ year use of z drugs / benzos / etc.,  I kindled several times and I survived 2 cold turkeys off high doses .  So – please don’t think because you cold turkeyed – it means you wont heal – I am a perfect example of the fact that you can and will heal.  Don’t think because you kindled you can’t heal – I did!   

My healing has been tested quite a lot – back to the stress of 50-60 hour weeks in corporate America, went through a break up of a long term relationship, moved, traveled, etc and none of it has caused a set back.

I think that there is so much opportunity to grow from all of this.  I learned that no one could soothe me other than myself.   People say they talked to baylissa and they feel better – that is awesome – but then ask yourself – why couldn’t you soothe yourself.  This is the placebo effect at full force.  Please tell yourself over and over again you are healing.  The brain needs to hear this message. I am not knocking counseling at all – I did tons of it in my life and it helped tremendously and I would strongly recommend it to anyone – particularly those who already had an anxiety problem.

We are a society that expects instant results.  We want something – we hit a button and it shows up within 48 hours.  We want relief – we pop a pill and it gets better.  We want info – we google and we find it.   The world existed long before any modern technology and medicine.  I take full accountability for the fact that all the hype about lack of sleep scared me enough that I went down the path of taking medicine to sleep.  The crazy thing is that that never achieved sleep – only sedation.  I now sleep better than I did for those 6 years of med induced sleep but it took about 10 months to get there. 

I have had people say – my life was perfect on benzos – why should I go through all this to get off – well – I’m not really sure the answer to that.  If your life was perfect on them – by all means – stay the course.   My life was tolerable on benzos and only once I got off did I realize how impaired my life had actually become.   I ended up on these meds for a severe insomnia problem and then the spine surgery.   It was never an intended strategy to use these meds to cope – I had always envisioned them as a short term solution.    The sleep issue got worse and worse and that is how I ended up in the vicious cycle of trying so many different meds – but thankfully I realized the root cause and couldn’t get off them fast enough.

I have also had people say – my life was perfect before benzos and now it’s a disaster – well – it couldn’t have been perfect or you wouldn’t have ended up seeking a pill…….   My life was pretty darn amazing before but it’s even more amazing now.   Surviving something this awful made me appreciate all the little things I never really noticed before and even all the things I did appreciate – they are even more amazing now.   I could see the cup as half empty again following something this awful but instead I see it as full.    I am fortunate that I had done a lot of counseling earlier in life and all the skills I learned came in quite handy.

                                 (My post cut off due to length so the rest of it is in the next post below here)
« Last Edit: June 26, 2018, 02:20:45 pm by [Buddie] »
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[Buddie]

Re: 2nd success story at 12 months - life just gets better
« Reply #1 on: June 25, 2018, 11:46:39 pm »
I realized my post actually exceeded the limit - so the last bit was cut off - here is the last of it:

Your best bet is to read a lot of success stories and focus on healing.  I did a lot of posting – initially – and then realized I could use the search box to see what was already out there.  That doesn’t mean you wont want to seek contact with people currently going through this for some support but I see so many people posting over and over again how they aren’t getting better – then they post they went into a wave and comment that they were so much better a week ago – despite a week ago saying they had made zero progress – they seem to be missing the opportunity to learn and grow from this.  If you can’t take a step back and see even a small amount of progress  – you get in a downward spiral – it’s going to be tough to recover.  I am not pointing any of this out to be cruel but rather in hopes people may recognize this pattern in themselves and realize they have more control than they realize and may improve faster – if they can get the negative thoughts under control.  I even stopped reading success stories at one point because they scared me – in terms of the length of time, etc.  My first window occurred when I lost access to the internet for a week and it was at that time that I realized all the googling and reading of horror stories was holding my recovery back.  Don’t get me wrong – I am very grateful this website existed to validate what was happening – but – if you only focus on the worst case scenarios – it makes healing much harder.  If you convince yourself that you aren’t going to heal – it’s a self fulfilling prophecy.  Rather than investing all that energy to build a case that you aren’t going to heal – put that energy into building a case that you will heal.  I think the issue with progress is that people are comparing their current situation to where they were before withdrawal – of course compared to that – it looks like there is no progress……. That is not the right baseline to compare against.   Keeping a journal may help you to see there is progress – I found looking in my journal on really bad days reminded me that I had made progress even though it didn’t seem that way.

I went back to each doctor I saw and let them know I healed without doing any aggressive Candida or SIBO protocols or heavy metal detoxs.  They were”shocked”.   I saw the cardiac surgeon recently and he too was shocked that I recovered without the propranolol.   My endocrinologist was also shocked to see that it was the benzos that caused all the crazy adrenal issues over the years……. Hopefully at some point the truth will come out and these meds will no longer be available….. I think every one of us can say “the problem” that brought us to using these meds was so so so minor in comparison to the aftermath they caused……

Aside from us going through withdrawal – those around us also are impacted.  My friends and family didn’t understand what was happening and I don’t think any of them actually believed it  - they thought I had had a nervous breakdown.  It is frustrating but I stopped trying to convince anyone and focused on soothing myself.  I had no one to love me daily and tell me it would be ok.  I ended a long term relationship with someone who told me to snap out of it – to get off my ass and get a job – as if I had been a lazy person deliberately going through some phase.  I had been a hard working highly productive individual my whole life – by 30 I was at the director level and by 40 I was president of a very successful consulting firm.  I came to realize I couldn’t expect others to understand this and they couldn’t have helped anyway.  Your body and brain need to heal and they will.   If you are fortunate enough to have people supporting you – try to remember this is taking a toll on them too.   Probably the most heart breaking moment I had in this mess was when my 12 year old niece asked me why God was not answering her prayers to heal me…… this takes a toll on everyone. 

I am pretty convinced most of the celebrity break downs and early deaths we’ve seen are related to these meds….. we can only hope after enough incidents – the truth will come out.

I wish everyone strength, determination, love, light, peace and healing.   I particularly wish it for the long term sufferers and pray you find hope through genetics and finding a practitioner that can look at your full clinical picture and get you on a program that can help you heal.  I believe healing is possible for every single one of us with the right information.

Here is the link to the neuro-excitatory food list – for those interested - I managed to cut out everything on the list - it was hard but worth it:
http://www.dramyyasko.com/wp-content/files_flutter/1279663001Neuroprovokers8.pdftry

I will try to stop in periodically to answer any questions this post may receive.

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[Buddie]

Re: 2nd success story at 12 months - life just gets better
« Reply #2 on: June 26, 2018, 01:42:04 am »
 :thumbsup:  Well written  Keep up the good progress   :smitten:
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[Buddie]

Re: 2nd success story at 12 months - life just gets better
« Reply #3 on: June 26, 2018, 02:44:22 am »
  OMG
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[Buddie]

Re: 2nd success story at 12 months - life just gets better
« Reply #4 on: June 26, 2018, 02:49:24 am »
Thank you for your success story! Very informative.
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[Buddie]

Re: 2nd success story at 12 months - life just gets better
« Reply #5 on: June 26, 2018, 08:40:17 am »
Interesting post. I followed a similar protocol as you in terms of diet. I was eating healthily before but I cut out all the histamine stuff. I was on ativan for a short period of time. First month off was great, next two were up and downs. The next 4 have seen a continual drop to the point where I am completely incapacitated mental and physically.

I always believed I was healing and rode out the waves but the past two months have been so bleak. And I'm not talking windows and waves, it has been 4 months of continual decline with no symptoms leaving, just more adding on top. I had a brain injury which was the reason why I was put on ativan in the first place. Now I'm wondering does my injured brain have the capacity to heal.

I'm now nearly double the time off the drug as I was on it, and I'm struggling to make myself food due to the cognitive impairment.
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[Buddie]

Re: 2nd success story at 12 months - life just gets better
« Reply #6 on: June 26, 2018, 11:13:01 am »
Thankyou for taking the time to tell your story, and in such detail. Im very grateful for this.

I must say that when reading your story, it elicited some mixed thoughts. You touched on many controversial topics such as vitamins, exercise, positive thinking etc which I thought were very interesting. However, I found inconsistencies and gaps in your thinking I could not reconcile and you did not demonstrate how you reconciled them yourself so I thought id ask.....

The main one was between i) your many appeals to intellectual authority when asserting you are a "highly educated, published scientist with 20 years in oncology research", extensive knowledge in physiology and endocrinology....etc etc. (there were many of these references) and then ii) your dismissal of the empirical foundational principles that underpin those fields as irrelevant when coming to your conclusions.

For example, you listed a long and extensive vitamins list and spoke at length about the physical affects and improvements you experienced. I work closely with experts in the medical field who tell me point blank that there are significant studies that show vitamin supplementation in those with a healthy diet provides no additional health benefit. Granted, you mention a rationale for why studies are likely not done in this area by the companies themselves but there are studies done nonetheless by many researchers that show no statistically significant effect on mortality and morbidity in either direction (some look for harmful effects/others look for positive effects). What is acknowledged is the well known placebo effect which you yourself did acknowledge. So my question I couldn't answer was..... do you see these vitamins as basically a placebo effect or are you aware of any significant research that informed your decisions?, because your story came across very much like you were making informed, empirical, evidence-based decisions about the vitamins based on your research of the literature.

That segues nicely to another subject you referenced which was the minds healing ability. I fully agree with you on this and have seen the evidence for this and you are very right to emphasize its potential in recovery and healing. The references you provided however; the secret and the power felt like strange choices for someone who came across as scientifically minded in their discussion. I mean, there are many scientific type references backing up the same point, why the secret and the power?, these (and i mean no offence) are scoffed at in the scientific community and really most places in academia that I have ever been. Could you elaborate on how these books, more than anything else, swung the pendulum to positivity away from negativity for yourself. The secret and the power have been openly called pseudoscience by many experts and journalists. For the record, I'm open minded on this and willing to explore outside the scientific "bubble" so to speak. But my scientific training makes it hard for me to accept these books without a skeptical mindset.

Once again, thank you for the very thorough notes on your healing journey. It must be the German emphasis on note keeping in your upbringing because it was really good to read such a thorough documentation of this journey.

it reminded me of a joke I heard recently at work

Question: How many Germans does it take to screw in a light bulb?

Answer: "One!, we are efficient and have no sense of humor"

Anywhoo, wish you all the best on your future endeavors and congratulations on recovering. Onwards and Upwards!

-Pinky




 
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[Buddie]

Re: 2nd success story at 12 months - life just gets better
« Reply #7 on: June 26, 2018, 11:32:57 am »
Interesting post. I followed a similar protocol as you in terms of diet. I was eating healthily before but I cut out all the histamine stuff. I was on ativan for a short period of time. First month off was great, next two were up and downs. The next 4 have seen a continual drop to the point where I am completely incapacitated mental and physically.

I always believed I was healing and rode out the waves but the past two months have been so bleak. And I'm not talking windows and waves, it has been 4 months of continual decline with no symptoms leaving, just more adding on top. I had a brain injury which was the reason why I was put on ativan in the first place. Now I'm wondering does my injured brain have the capacity to heal.

I'm now nearly double the time off the drug as I was on it, and I'm struggling to make myself food due to the cognitive impairment.

Apologies I meant to add a question onto this (not the sole purpose of being a complete bummer). Do you think an unresolved brain injury could prevent healing. I ask this because I have gotten progressively worse and am now experience some really quite extreme neurological symptoms that seem quite rare (from reading on here) on top of the more normal symptoms (fatigue, anxiety, tremor, depression) plus the longer off the drug I get the worse my memory has become (i realise this could be an offset of DR/DP/Depression)
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[Buddie]

Re: 2nd success story at 12 months - life just gets better
« Reply #8 on: June 26, 2018, 12:11:18 pm »
Just stopped back in to see if there were any immediate questions -

will try to answer them:

Gooner - yes - I believe an untreated brain injury could very well hinder recovery.  I will try to look it up but a Dr Nemechek out in Arizona has published quite a bit on brain injury and less than traditional healing modalities - he was about to publish something new - not sure if it's come out yet.  I imagine you will need to pursue some traditional physical therapy programs - i have a friend who slipped and fell on the ice this winter and got a concussion and is going through just about all the things i did and she is getting tons of PT / OT etc and insurance is of course covering it since a concussion is recognized as a medical issue - sadly - our situation is not

Pinky - i debated addressing many of the things you asked about but the post was already so long.   For anyone who knows me - they know i pretty much don't believe in modern medicine anymore after all i've witnessed in my 20 yr career - with the exception of hte developments going on in oncology - which is the only reason i remain in my career.   My doubts began 12 yrs ago when my 12 year old niece was born entirely normal and thriving until she received her millionth vaccine and suddenly became SEVEVERLY autistic- she was not born that way - it took $100,000 in non traditional healing modalities and she is recovered 100% and thriving.  Much of what recovered her was following Dr Amy Yasko's protocol - and an 18 month old has no ability to recover due to hte "placebo effect" - she went from being non verbal, non responsive, hitting herself in her stomach and banging her head against the wall back to a totally normal, thriving child.   

As mentioned - there are no published scientific studies on vitamins - and most of my doctors will say they do nothing.  I can only go off my own experience that i healed from several health crises using them where my labs were off the charts and then went back into the normal ranges without taking the "pills" the doctors wanted to use.    Any doctor under the age of 50 has only learned "you see this symptom - you give this pill" - by own endocrinologist didn't know what hte HPA axis was...... the reason I know is because oncologists understand it far more than endocrinologists.  In the end i found a functional medicine doc who is 74 - ex Navy trained MD - who has left traditional medicine and he said doctors his age all knew the dangers of valium and all understand how the body heals based on actual function - not in using pills..... one of my labs that went through the roof was IGF-1 during this - that was scary because when you read about high IGF-1 it can be from cancer - its most often caused by too much dairy or sugar but given i was consuming none - i knew that wasnt the cause - after enough research - i found that lycopene can reduce IGF-1.  I started it - within a month my number dropped from 260 to 215 and another month later it was 160.  i have another friend who also had high IGF-1 - she started on it and had the same results.  After resuming Vitamin C my cortisol levels dropped dramatically .  This is my own evidence - everyone can decide for themselves but given i had lab testing to show i was deficient - and major improvements occurred after going back on vitamins - that is all the evidence i need.

I reference the Secret and Power because they are easily accessible and understandable.   Major oncology institutions like MD Anderson and Dana Farber recommend them.  They are an easy read .  I had some hesitation because the books basically say we are all responsible for our current situation and that could upset people - it also says - shit happens - and its how you respond to it that matters..... either way - reading them changed my life - perhaps because i read far too much heavy science all day long - something simple appealed to me

As for the german joke - i've heard the same one and there is a different answer to it - "zero - because it was engineered so efficiently it will last forever" ......  my parents were both born and raised in germany and i have many german friends and we all get a good laugh over our toughness , rigidity, etc,  we have a sense of humor about it- we all say its the source of our success and failures.....
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[Buddie]

Re: 2nd success story at 12 months - life just gets better
« Reply #9 on: June 26, 2018, 02:45:01 pm »
Thanks for the info. Your neuro-excitatory food list food list does not work. Could you send it again?
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