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You WILL heal even extreme cases-my christmas gift to myself is my success story


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Dear Fellow Warriors -  my success story is very different from the majority posted and I want to provide a warning that if you feel reading about an extremely severe case may upset you - please do not read this now.  Come back to it when you feel you are in a better place. 


I apologize for the length of this but I know when I was reading success stories to get myself through this - I had always wished and hoped for more detail.  So, I am going to provide it.  I will try to break this up into paragraphs and segments as I easily recall how difficult it was to read early on.  What I will say up front - in case you can't get through reading this - is that I did NOT do any exercise or meditation to heal myself.  I was so upset reading all the success stories because so many emphasize how these were key to healing and I could not do either.  Initially, I became convinced I would never heal since I could not do either.  Prior to benzo withdrawal I was a master meditator and exercised 6 days a week – so – it was so upsetting when I was unable to do the very things that used to bring me stress relief.  I will explain more about that below.


First - my story is complicated but I think it's important to understanding all of what happened.  6 years ago I became very ill – at the time - I didn't know why.  Only now having gone through benzo withdrawal was I able to piece together that the serious illness was withdrawal from an anti-depressant, which I took for 6 months after going through a very traumatizing event... I became so ill I was put on 3 months medical leave.  A year after that, I came to learn I had chronic lymes - confirmed by 3 different labs.  I went through 2 years of trying to kill Lymes.  I thought nothing could ever be worse than neurological and chronic lymes, boy was I wrong.  After beating lymes,  I was still in chronic pain, and came to learn I had 2 broken discs in my C-spine - C5-7.  I ended up having surgery - again - thought nothing could be worse than that..... oh how little I knew.  My tolerance for pain is extremely high - I've had ACL/MCL reconstruction, double hernia repairs, broken discs in my neck, etc., and I never took pain medication. I was an aggressive athlete and had many injuries.  The pain from any of those was nothing compared to the pain I would experience during benzo withdrawal. 


So how did I end up on benzos. First, I developed terrible insomnia from the lymes.  That insomnia was NOTHING in comparison to what I faced later in benzo withdrawal. So I began lots of trials of different sleeping medication - through a doctor - legally prescribed - all kinds of things, ambien, lunesta, trazadone, gabapentin, mirtazipine, remeron, sonata/zaleplon, etc.  After trying many things, I stayed with sonata as it seemed to have the least side effects.  Looking back - I went through some mini withdrawals from trying many of these.....  Eventually even that wasn't working so then began adding in ativan.  I knew it was addictive so only took it once every 3rd night to ensure I was getting sleep.  I had no problems using it that way.  I never craved it or thought about it.  However, looking back, I can now see the impact it was having on my life, though I didn’t see it at the time.  The icing on the cake came from the spine surgery.  I went home with a bottle of Valium - instructed to take one 10mg tablet every 8 hours - and so I did.  I did that for a week.  Then week 2 - I took 10mg twice a day.  Then week 3 and 4 - I took 10mg once a day.  This was my own taper – the surgeon provided no instructions at all….. Then I stopped the Valium – didn’t realize this was a “cold turkey” because the surgeon never explained that what he gave me was very high doses.  Mind you - I weighed 140 pounds at nearly 6 ft tall.  I was doing physical therapy and seemed to be kicking butt with my recovery.  The spine surgeon had to take a 2" chunk of my hip bone out to replace the broken discs that were removed from my neck - yet I was on the treadmill walking 2 miles a day 2 weeks after major surgery – that is how tough I was.  Despite doing well early on - I found myself becoming weaker and weaker and my pain level increasing.  I also noticed strange things like a sense of impending doom.  I couldn't make eye contact with people and I started having hair loss.  When I stopped the valium I went back to taking the sonata nightly and the ativan once every third night. 


Then around 6 weeks post last dose of valium - I woke up on my bedroom floor  - having been unconscious for some period of time.  I crawled to the bathroom - pulled myself up and saw my pupils were fully dilated.  I spent 20 yrs working in medicine and I am a trained EMT so I knew this was NOT GOOD.  I called my mother who drove over and took me to the ER.  Lots of tests run - doctors told me I "probably have POTS"..... was told to follow up with a cardiologist and neurologist.  On the way I home I picked up a pulse monitor and BP cuff.  3 days later - I woke up in the middle of the night in absolute terror gasping for breath - put on the pulse monitor to find my heart rate going from 45 to 165 to 55 to 185.  All over the place.  I knew I was in atrial fibrillation.  It was 2am and I live alone.  At 6am I called my father who took me back to the ER - en route - I lost consciousness as my pulse hit 225.  I didn't even know that was possible – I worked in a level 1 trauma center for 4 years and never saw a pulse of 225..... 6 hours later after tons of IV medications were given- they couldn't stop the a-fib so I was admitted.  3 days later – I left the hospital with 3 different cardiac meds.  How could this be?? I had been a health nut, athlete my whole life.  This made no sense.  No family history of cardiac issues.  Well - very quickly things tanked.  I couldn't tolerate the cardiac meds.  My BP was dropping to 80/40 and I was passing out.  So - emergency cardiac ablation was scheduled.  I was on the OR table 8 hours -  the cardiac surgeon could not stop all the arrthymias and my vitals went too low so they had to stop.  I was stabilized and sent home again - 3 days later – I was in non stop arrhythmia - wore a holter monitor to find out I was still in a-fib 80% of the day.... the surgeon told me I needed to get my “anxiety” under control - I was like what anxiety - I am not an anxious person but I was highly distressed over my cardiac situation.  I am the person who stays calm under pressure so this was making no sense at all.  So - stupidly - I called my doctor and asked for the valium since I thought I had done so well after spine surgery....... oh yes...... I "re-instated" only didn't know that that is what I was doing since I didn’t know I was in withdrawal.... thus ended what I now call withdrawal round  #1.


Three weeks later, I had my 2nd cardiac surgery done by one of the top cardiac surgeons in the world.  It went 6 hours - this time the surgery was a success.  The surgeon was in a state of disbelieve – all 4 pulmonary veins had reconnected despite being ablated 3 weeks prior.  He said this was almost inconceivable.  I then wore a holter monitor for a whole month and it showed that things were "ok" but my heart rate was going a bit faster than they'd like.  My sleep was getting worse and worse.  I figured it was from the stress of the 2 cardiac surgeries on the tail of major spine surgery.  I had stopped working right before the 2nd cardiac surgery thinking some time off would help.  Then after about 6 weeks back on the valium – I started having nightmares during the few hours I was sleeping.  Then I couldn't sleep at all.  And each time I took the valium - at night only - within an hour - I was having a full blown panic attack – not the “relief” one would have expected.  At that point - I concluded I was having a paradoxical reaction to it, so I quit - cold turkey - again!  I tried to start the sonata and ativan - only now - I was also having paradoxical reaction to those.  So, I stopped it all!  Cold turkey off 4 years of sonata , 2 years of intermittent ativan use and  what was about 2.5 months use of valium (4 weeks from the spine surgery – 12 weeks off and then another 6 weeks following the first cardiac surgery).


I quickly started doing research about withdrawal as I was now in withdrawal #2.  I needed to understand, from a scientific perspective, what was happening to me and what I was facing.  I am a scientist so I thought I could "out smart" this if I understood it.    Before I get into the science - here is what I went through during withdrawal round #2 – I took no notes round #1 because I had no idea that I was in withdrawal:


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

Hallucintations - 6 weeks

Anxiety - non stop 4.5 months

Akathisia - non stop - 4.5 months

Extreme pain - everywhere - 4 months, then month 5 moderate and month 6 onward - mild

Myoclonal jerks - 3 months

Seizures - 2 months

Paranoia - 8 weeks

Rage - episodic over 4 months

Difficulty speaking - several weeks

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

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 - Remains

Rapid aging - i went from looking 10 years younger than my age to 30 yrs older...... thankfully - this did reverse


Ok - that is most of my symptoms - I'm sure I've forgotten a few.  There are honestly no adjectives that can capture the utter horror and severity of the things that I went through.  Early on I prayed to God to give me the strength to survive what was happening.  But then I started praying for God to bring me home. I could not envision ever getting better.  I was so physically, emotionally and intellectually disabled.  I had convinced myself that there was NO recovering from this.  I convinced myself because my body was so weak and worn down from 6 years of health battles – Lymes, spine surgery, 2 cardiac surgeries - that there was no way I was going to recover.  Yet  - I DID!!!!!  Although I read a lot in benzo buddies - nothing prepared me for the waves.  Around week 8 -  I went into a 19 day window and thought I was healed - only to go into a 6 week long wave that was FAR WORSE than acute.  Yes, worse.  I never imagined it could get worse and it did..... I say this not to scare you but to assure you that if this happens - it's normal and you WILL recover.  Despite how horrible this all feels - there is repairing going on 24/7 inside our bodies and minds – even if we can see absolutely no signs of it.  To the outside world  - it looked like I was having a nervous breakdown - and I guess to some extent it was - it was a chemical nervous break down.  My life was actually going really well when this hit - so - i had no emotional reasons to have a break down of any kind.


I think most success stories try to find a subtle way of saying this – and I will try to find a way to say it too.  BB was a HUGE blessing.  It allowed me to find validation to what was happening to me.  It allowed me to see I was not the only one going through this.  It allowed me to connect with a few other people who were having very similar situations to me and that brought me peace.  I quickly learned that anything I asked – the answer was – yes  - that is normal – and there is no way to predict how long it will last.  I decided to use the search box and type in my symptoms and found tons and tons of threads that validated all my symptoms were withdrawal.  But the downside was – being in BB all day – filled my brain with tons of ideas about what could happen and the idea that it could take years to recover. This brought tremendous fear and distress.  Then I was forced to take a break from BB because I went to a remote cabin in the woods where there was no internet.  I was forced to just look at the beauty of the forest and lake and to stop madly googling my symptoms.  At that point, that is when I went into the 19 day window.  I almost posted a success story around week 11 and then by week 12 I went into a horrific wave – that as I mentioned – went 6 weeks with unrelenting emotional and mental tortures that I simply cannot describe.  What little sleep I had regained was lost.  This is when I decided I needed to sell my house and accept I was in for the long haul.  I also got to the point of being so suicidal I knew it was not safe to live alone anymore.  I eventually ended up living with my sister and my 2 nieces.  I was so concerned about my nieces seeing me so ill.  I didn’t want to scare them but I had to go somewhere.  Talk about personal growth – rather than being able to hide and have no one see my skeleton like, acne covered body – I had to expose myself.  I never thought I could survive it- yet I did.


I found that these circumstances forced me to overcome many things. I was sick and weak yet I had to pack up my house.  That took a ton of physical and emotional strength – but I did it.  I guess when you have no choice – you must go forward.  When I lived alone – I had to cook for myself.  I had to – there was no one who was going to do it for me.  At the time, I was emotionally blunt – I had ZERO emotions and what a blessing that was – because selling your beautiful home that you spent 13 years perfecting  - is no easy thing to do. 


When I got to my sisters house – she recommended I start reading a trilogy series of books she had read and found interesting.  I laughed.  I thought I couldn’t read.  I was having a very hard time comprehending anything, yet I tried.  It took me 2.5 hours to read 5 pages.  I read them over and over and couldn’t understand the words.  I was angry and frustrated.  So, I put it away and tried again the next day.  This time – I decided i would just read the words even though they meant nothing.  I wouldn’t get hung up on trying to follow who the characters were and how they were related or what they were doing – I would just read the words – but suddenly -  I was indeed comprehending .  So, had I given up the first try – I never would have done it.  That was a turning point for me.  I then spent 3 weeks away from the computer – just immersed in these books – excited to learn where the mystery was going.  This was a HUGE turning point for me.  Ahhh – so – this WAS distraction!!!  Movies and TV weren’t doing it for me – but this sure did!!!!


Most of the success stories talk about acceptance.  Acceptance is key to healing – but WHAT does that mean??  I came to find acceptance around 8 weeks into this.  Acceptance – for me – was accepting that what was happening to me WAS benzo withdrawal.  I stopped looking for some strange diagnosis- learned the science and found utter peace in the fact that there was no horrible missed diagnosis.  This HORROR i was experiencing could all be explained through physiology.  The sooner you accept this - the faster you will heal.  For anyone who cannot find peace in knowing your symptoms are benzo withdrawal  - please consider seeking counseling to gain control of health anxiety.  The more you worry you have been permanently damaged or that there is something else wrong - the slower you will heal........ I say this not to scare you or upset you but to get you to see that while we have little control over what is happening - we can stop freaking out that there is something wrong – other than withdrawal.  If you’ve had test after test and they are all normal – and you cannot calm down – you likely need to seek some counseling to deal with health anxiety or you may end up going in circles where it seems withdrawal is not getting better when instead you may have a real anxiety problem that needs to be addressed.


I feel I have healed in record time - I did this through doing a few key things:

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?

2.  Eliminated all DAIRY - I have no dairy allergy but dairy can be very inflammatory

3.  I eliminated all High Histamine foods -  this was brutal as it cut out many things - but why add to the histamine imbalance

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.

5.  I started taking food grade bentonite clay from day 1 - it heals the gut.  The traditional ways of healing the gut - probiotics, bone broth, collagen, fermented foods - guess what - they are all high in histamine and may make you much worse

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 6 yrs ago - so this was not an option

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

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 those books I mentioned above.  TV, movies and magazines didn’t do it and spending all day on BB is NOT distraction

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 supplements 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 supplements 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, valerian, etc.,  so – I never took any of them.  I suspect they provide temporary relief but ultimately may slow healing.  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 do advise that you get periodic labs done to check on your health – particularly your thyroid and hormones – if these go out of whack and are not treated- it may slow your healing.  Feel free to email me if you want to ask more about that.  As I mentioned - I was not able to exercise at all during the first 6 months of withdrawal #2.  Each time I tried - i'd go 3 days with zero sleep and tons of adrenaline surges.  for those of us with weak adrenals - exercise can harm not help the healing process.  If you can exercise without negative consequences- go for it - as it does heal.  I also couldn't meditate - i could not quiet or still my brain.  So, I gave up trying.  I still healed :).  I have received some questions about what labs I monitored - here is the list - feel free to PM to ask more about this - TSH, free T3, free T4, C reactive protein, IGF-1, homocysteine, histamine, catecholamines, B-12, Vitamin D, free testosterone, prolactin, estradiol, progesterone, ferritin, liver function, morning cortisol.  You can find a doctor or chiropractor to order those.  Independently - I ordered saliva test kits for 4 point cortisol and neurotransmitters.  I also did do the western blot twice to ensure the Lymes antibodies had not increased - they didn't - benzo WD very much mimics lymes symptoms.


I look back and wonder how on earth I survived so many months with nearly no sleep.  In the beginning – we are cranking out adrenaline and glutamate so despite no sleep – we continue to function. 


All together – my withdrawal – between round #1 and #2 – lasted about 8 months where things were horrific – most of the time.  Despite the severity of things – seizures, cardiac arrthymias, etc., I healed pretty darn fast and I think it’s because I recognized – early on – that freaking out only depleted the GABA I was trying to build.  I recognized each negative thought impacted my brain and depleted serotonin.  I reminded myself that while I could not force the neurotransmitter RECEPTORS to regrow any more quickly than they would – the more I could do to tip the scale in my favor – the better.  Many people say cutting out gluten, dairy, sugar, caffeine and histamine foods is extreme.  Yes, it was and it wasn’t easy at all – but it allowed my brain and body to heal.  If you've ever watched the Twilight movies - think of ourselves as Bella at the end of Breaking Dawn Part 1 - our bodies and brains have been utterly destroyed- and then one day - some magic happens and we are fully restored- with a new lease on life!


I know this was a very long story but I felt all parts of it were necessary to share.  I must say thank you to a very special benzo buddy - she knows who she is - I send her a note almost daily to thank her for helping me through this.  If it were not for her - I wouldn't be here to write this story – she convinced me I had a life worth saving.  She is an angel and she's still struggling.  I pray for her healing every day.  No one around me understood what was happening.  People tried tough love - well - that simply doesn't work.  This isn't a phase we can just snap out of.  It's not a choice.  But do know that you CAN influence your healing by practicing acceptance and through stopping the negative thoughts.  You must stop them.  Each time you say  “I can't heal”  or “I am too weak to heal”  or  “I am permanently damaged”  you are setting yourself back.  I know this is upsetting to hear but it was only when I stopped those behaviors that the tide began to turn.  I also must thank Freedom82 - it was his success story that helped me believe I would get better!  He was right  - trust the windows – not the waves.


Despite how horrible this was – I can actually say “thank you” to the surgeon who put me on those massive doses of Valium, had this not happened -  I never would have realized the medicine I was taking for sleep was slowly destroying my life.  Also – I grew in ways I never imagined possible throughout this ordeal.  I am much more brave than I ever knew I could be and so are ALL of YOU!!  While we can support one another – we must soothe ourselves.  Give yourself credit for surviving every minute, hour, day, week and month of this.  In the beginning – I didn’t think I could endure 4 weeks of hell – yet I survived many many more months than I thought I could.  No one other than a fellow benzo withdrawal survivor will ever appreciate the depths of hell we’ve endured.    Little things that used to bother me – don’t anymore.  And the world is a much more beautiful place than I even knew.  Colors are more vibrant.  Food has more flavor. Happiness is a like a high now.  Even sadness is something I can appreciate after going through months of total bluntness.  My career is back on track.  I’ve reconnected with the friends I shut out.  I am able to go to restaurants and social events.  I can exercise again!  I’ve been through a few stressful things that have tested my healing and I’ve done fine!  I waited 8 weeks to ensure no other big waves were coming before posting this.  I am over 26 weeks from my last dose of a benzo or Z drug.  I am left with tinnitus and some muscle tension/pain but I can ignore both because I have my life back!  I keep a fan running all day long and that allows me to block out the tinnitus.  Some have said I am “lucky” to have healed so fast  - I don’t think it’s luck – I took a scientific strategy towards giving my body the best chance at healing.  Some say I have healed fast because my benzo exposure was short - perhaps.  But I was on a Z drug daily for 4+ yrs and on Ativan twice a week for 2+ years aside from the massive doses of valium I was given for spine surgery, so, I think my system had a pretty decent assault……  at the end of the day – it’s not a contest.  We are all in this together.  We’ve all been hurt and we will all heal.  From my interactions with people in the forum – it seems those who discontinued both an AD and a benzo are in worse shape.  This makes sense because all parts of the neurotransmitter system were hit.  But don’t give up – you will heal – it may just take a bit longer.


So, on this Christmas Eve – I say thank you for my healing, thank you for this journey, thank you to everyone who helped me along the way.  I thank my sister for giving me a place to live and for the love of my precious nieces.  I thank my parents for making many runs over to my house to take me to the hospital and bring groceries.  It was incredibly hard for them to witness what I went through.  My family didn't understand it but thank god they loved me and didn't turn their backs on me.


Here is the link to the neuro-excitatory food - I managed to cut out everything on the list - it was hard but worth it:



Here is a layman explanation of the physiology of what is happening for those interested and why I think my strategy led to healing so fast - our HPA axis is completely screwed up by benzos.  In case you don't know what that is - hypothalamus, pituitary, adrenal axis.  If you read the below and other posts in the forum about the HPA axis – you will see there is a very logical explanation for all our symptoms – and this gave me peace:


The Pituitary is our MASTER GLAND - it controls the following hormones - ACTH, FSH, LH, Prolactin, TSH, ADH, oxytocin, renin-angiotensin


The Hypothalamus - Maintains the body's HOMEOSTASIS - it's the connection between the endocrine and nervous systems


Adrenals - controls fight or flight response system and many other things

The Vagus Nerve becomes highly inflamed during withdrawal  - it controls the parasympathetic nervous system - loss of vagal tone = issues with heart rate, peristalsis, sweating, muscle movement, speech, gag reflex, breathing, bladder, swallowing, etc.,


Aside from impacting the HPA axis, benzos serve as an anti-inflammatory, an anti-histamine and an anti - everything.  When you stop a benzo - your histamine and glutamate levels will go through the roof.    Also - 80% or more of our neurotransmitter receptors are in the gut - not the brain!  So this explains why we experience so many GI issues.  Think about this – when you stop the meds – you remove the BREAK and now the ACCELERATOR has been hit because we have no GABA and tons and tons of Glutamate. 


Symptoms of high histamine - headaches/migraines, insomnia, hypertension, vertigo, dizziness, arrhythmias, difficulty regulating body temperature, anxiety, nausea, vomiting,


Symptoms of high glutamate - pain amplification, anxiety, restlessness, difficulty focusing, ADHD-like symptoms


If you've had your genetics done - if you have the MAO, COMT or MTHFR gene defects - I have all 3 - you are definitely hit harder - as we don't build or break down neurotransmitters normally and we also can't detoxify very well......


There really is an explanation for our suffering.  The brain WILL heal.  The more you can practice acceptance, gratitude and awareness – the better off you will be.  You can also do nothing at all.  That is a perfectly acceptable path to take.  You will still heal. 

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Congratulations SSRI! And thank you for your detailed account of healing.


If you don’t mind, would you tell us what a typical day of eating looks like for you?

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Amazing❤️ So happy for you!!! Just reading this makes me want to cry. After all you have been through you truly deserve pure happiness. You have fought and won the hardest battle of all time. I'm so grateful for your support throughout this. In spite of all the suffering you endured, you have always been there when I needed someone to reach out to and for that I am forever grateful. You have given me hope once again that there is an end to this. Feeling so much joy for you right now and thank you for all the details it does really help. Merry Christmas!!!🎄
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To answer the question about what a typical day of eating was for me - here it is -


Breakfast - 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

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


When I was hungry and needed something more - i ate gluten free bagels, gluten free pretzels, bowls of cheerios, rice crispies or crispix cereal with unsweetened almond milk.  As you can see that was VERY limited.  The only thing I put on food was olive oil and sea salt for flavor.  As my healing progressed I was able to add a protein shake in - i couldn't tolerate that early on but around month 4.5 when i was so terribly thin - i added it back in - the first few days were rough - i felt very revved - but then my body and brain adjusted.  I did use small amounts of butter here and there but very very little.  I also ate eggs here and there.  This is far more carbs than i ever ate before - having things like rice and sweet potatoes but I needed something of bulk to keep me feeling full.


Now I can make gluten free pancakes and put a little syrup on them.


To drink - i literally only had water - and i'd set my timer to make sure i was drinking a large glass every other hour because despite thinking i was drinking water - i wasnt - the jugs were piling up - i used to go through 6 gallons of water a week - so - when the jugs started piling up I knew I wasn't drinking but frankly the day was a total blur to me.  I started making paper checklists for breakfast lunch and dinner to ensure i actually was eating..... I never had anything other than water- no juice - no ice tea - no tea - no nothing...... it was boring and awful but it allowed me to heal.


Sea salt is very healing for the adrenals - so  i took 1/4 tsp in morning and 1/4 tsp at night. 

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Thanks for the well wishes everyone - Faery - keep the faith - i know it's tough but you will be ok!  Virek - i know you will get your life back and enjoy time with your son once again. 


oh - i thought i'd mention - since i say so much about histamine - i did not go on an antihistamine - as our bodies need to learn to eliminate the histamine on it's own.  And many prescription strength antihistamines alter hormones - such as prolactin - which is why people lose a lot of hair when taking something like seroquel - which is an H2 blocker - this is why it works so well for sleep - its crushing the histamine..... ultimately - our bodies need to heal on their own.  Around month 4.5 i did start taking benadryl here and there for sleep since i was so desperate.  I also tried Unisom - it has a different antihistamine in it - it knocked me out for 10 hours - which felt amazing but left me feeling disoriented and confused...... so - now - if i do have a bad night- i might take a 1/3rd of a tablet and i do get some sleep!    When the itching started - i really started looking into natural ways to lower histamine.  I had tried Quercetin and it did nothing at all but then i tried Astragalus - WOW - it knocked the itching out within a few hours.  i take it once a day and haven't itched since :)



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Congratulations! An amazing story! And thanks, too, for the detailed account. You've made a wonderful recovery, and clearly, you're not taking it for granted. Merry Christmas and all the best to you!
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Thank you thank you thank you  for your story. We’re all in this together. I’ll try this diet tomorrow and see how I feel in January. Happy holidays and congrats on your success!
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you're welcome Rickatu - just know that you may not see any immediate gains from changing your diet.  IF you happen to have an allergy and you eliminate something - you often see positive results within days or two weeks but with our situation - it's not that we are allergic - it's that we have significant imbalances - so the rewards for changing diet are not apparent for months .  But I am certain by eliminating all gluten, dairy and high histamine foods - this allowed my body to heal much faster.  It didn't stop the few months of horror but I really believe I'd still be suffering right now had I not made those changes and kept the faith that they would pay off.
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Thank you for posting that.


I am new on this journey and it is incredibly helpful to read.


Before I started withdrawal my diet was pretty much as you described.


Since I started withdrawal I have not been able to continue with my healthy gluten and dsiry free diet because my brain has become very confused about what is edible. The textures of vegetables are freaking me out and I can no longer bear to eat meat. I can't bear to eat anything hot or cooked.


All I seem to be able to manage is fruit, nuts, seeds and raw carrot and celery stucks - otherwise only junk like biscuits etc.


Any advice? It is very odd as I generally ate a very healthy paleo style diet prior to this. It is literally as if my brain is making category errors and thinks things are not edible.



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Hi Ajusta - i completely relate to what you are saying - i had various food issues - at first i had ZERO appetite , I also had a lot of nausea and my gag reflex was very sensitive.  when i had that metallic taste in my mouth - nothing tasted right - then i went through a period where i had no sense of taste at all.  i also went through a period where I was terrified of everything including food.  i was certain everything i was eating - which wasnt much at all - was harming me...... once i got too thin and was so weak - i had no choice but to force food down - it was a tough week or so but eventually i won the battle and was able to eat again.  my only advice is to keep saying to yourself - this food is not harming me - and get it down as best you can.  our brains go through a lot of irrational thinking - so - its had but i told myself anything that wasnt gluten, dairy or high histamine was not going to harm me and i forced it down..... i had to set my timer to remind myself to eat.  much of those early few months are a blur so i am glad i took notes to be able to go back and make sense of it
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With me it's more like my brain is confusing categories of objects. So part of it is telling me that, say, a plate is edible or a toothbrush is edible but that food is in a category of 'things that aren't edible. Rationally I know this isn't right hut instinctually the feeling is very strong. It's VERY strange. I feel like I'm stuck in an Oliver Sacks case history. ' The Woman Who Ate Her Toothbrush'....


My degree is in philosophy so I can only describe it as 'Category Errors'


I can manage gluted free toast atm so that is good.

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you're welcome Rickatu - just know that you may not see any immediate gains from changing your diet.  IF you happen to have an allergy and you eliminate something - you often see positive results within days or two weeks but with our situation - it's not that we are allergic - it's that we have significant imbalances - so the rewards for changing diet are not apparent for months .  But I am certain by eliminating all gluten, dairy and high histamine foods - this allowed my body to heal much faster.  It didn't stop the few months of horror but I really believe I'd still be suffering right now had I not made those changes and kept the faith that they would pay off.


What am I going to lose? I've noticed I've been eating more when the anxiety hits so I'm gaining weight at the moment. Eating the way you described is healthier for my body and mind anyway. Thank you again for your story, I read every bit. Hope you come back to give us a year update in the future but I understand if you just want to move on with your life also -see you on the other side soon (hopefully)  :)

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I will look forward to reading your success story Rickatu!  You will get there.  I do plan to pop in to provide reassurance to those early in the process.  It was so hard to believe that any kind of normal life could be reclaimed with how bad things got.  I had a hard time being in the forum while I was suffering but now it's not difficult because I feel safe and like the worst is behind me.  I will provide updates along the way because I hope to be able to report the tinnitus is gone and the muscle tension is absent - what final blessings those would be!! 
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Thankyou so much for your success story! It always helps to read the stories of those who have healed.  I fully agree with what you wrote about acceptance (I manage this most of the time now) and gratitude, i practice writing a gratitude list every day now, although it is hard to imagine any external factor that could make this hell easier, I can think of many that would make it worse!

Enjoy being healed and thanks for providing HOPE (Hold On Pain Ends)

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SSR1975-you’re gluten free, too! I have celiac disease so I have to be gluten free. It’s tough but there’s so many good gluten free options out there now.
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SSR1975-you’re gluten free, too! I have celiac disease so I have to be gluten free. It’s tough but there’s so many good gluten free options out there now.

I have Celiac as well, was diagnosed about 12 years ago and, and have not eaten gluten since - other than a very occasional accidental glutening. 


I do not really know much about the science of it, but gluten binds to the opiate receptors in the brain, even for people who do not have Celiac, although it does not get you high. 

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Did your depression and anxiety start when you realized you had celiacs? Mine did. In 2009, I got diagnosed and the depression and anxiety came with it
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Thank you so very much for sharing your recovery and the links!! At 19 months out (from zopiclone use only) I need a boost and you have provided it.  Congrats on your recovery
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Did your depression and anxiety start when you realized you had celiacs? Mine did. In 2009, I got diagnosed and the depression and anxiety came with it

In my case, I had depression, anxiety, and a host of of other issues before I was diagnosed.  Diagnosis was actually a good thing,  with the gluten-free diet in place at least my body could heal. 

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