2nd success story at 12 months - life just gets better

yes - in the beginning because histamine levels are sky high you will have no appetite and nausea.  that is why medications like antihistamine or meds like seroquel cause weight gain - because they reduce histamine which allows people to sleep and returns the appetite.    i lost 25 pounds total in about 4 weeks - i was a walking skeleton because i was already too thin to start with .  i just set my phone alarm and force fed myself several times a day

 

ensure is garbage - its soy which is only going to make things worse.

 

unfortunately i don't have any recommendations for cheaper vitamins - if they are cheaper they like contain bad ingredients...... i spent thousands during the healing period.  the only brand vitamins i use are Solgar, NOW, Swanson. Life Extensions, Doctors Best.  that said - some vitamins like B-1 and B-2 are pretty inexpensive compared to others and can really help improve things 

Thanks so much.  Now starting to reintroduce some much needed food.  Greens, and proteins a little at a time.

 

B

 

Thank you so much for your time and help.

 

I still cannot believe that, after just three months of use and a protocolary taper under strict psychiatric supervision I am suffering an awful withdrawal.

Very few doctors here seem to be familiar with this syndrome. Least of all the psychiatrists themselves who are responsible for the prescriptions. It is beyond shocking (I live in Barcelona).

I am still fighting to make everyone, family and friends included, believe that what is happening to me is real, well documented globally, and sadly experienced by many, many people worldwide.

Since a lot of people I know has taken benzos and had no side effects at all, I really think you are very, very right pointing out the fact that many of us might have a genetic or mutation issue to be so damaged by a drug that half the planet consumes as candy (I had NEVER taken a benzo in my life, they told me to take it last fall because I was going through a stressing period… who does not, really…). I cannot think of a better explanation.

 

My tinnitus is tonal in one ear (medium pitched) but awfully pulsatile in the other (whooshing sounds and electric buzz). It is stronger when I wake up in the middle of the night or in the morning.

The sound sensibility is still there after 10 months, since the start of my taper, but much improved (yours is totally gone, right?)

Sleep, hopefully, has come back. Not perfect because of the tinnitus, but much, much better than it was months ago.

I am hopeful for a full recovery.

 

Have you resumed normal diet? I mean, are you able to indulge yourself with a piece of cake (sugar), baked goods (gluten) or a glass of wine two and a half years off?

 

Best wishes and thanks again.

At what point did you just have to get up and do more?  I can't just lay here and heal I have to get up and do what I can everyday?  I got to get up and try!

 

 

to answer the question about diet - i choose to eat very healthy - based on my genetics gluten is generally going to be an issue - because i'm a fitness fanatic and trying to maintain my slim figure during peri-menopause - i choose to eat very strictly and honestly don't feel deprived.  however-  i absolutely - a few times a month have gluten - definitely at least once a week enjoy a sugary piece of dessert - no issues at all.  i was VERY hesitant to try alcohol based on all the warnings of those who have come before us.    so i waited until close to the 2 yr mark and literally had like 1/4 glass of wine -  no ill reaction - a month later i tried a half a glass of wine - no ill reaction  - waited a month - had a full glass of wine - no reaction.  so - maybe once a month i have a glass of wine and thoroughly enjoy it .  on thanksgiving i decided to be crazy - it was 2.5 yrs out and had 3 glasses of wine - but i took a bentonite clay capsule right when i started drinking the first glass and 2 hours later took a 2nd clay capsule - i suspect it absorbed much of the alcohol - i never drank to get drunk - just love the taste of wine.  so - i am glad  i can enjoy a little here and there - not sure i'd go back to trying to have 2-3 glasses once a week - which is all i had consumed before this.  i've not tried beer-  its high in histamine since its fermented.  i also have not tried liquor - about 8 months into my healing i went to my sisters house for dinner and her husband had grilled ribs all day long - i ate them and an hour later was having a horrible reaction - turned out he put a ton of bourbon in the bbque sauce...... i thought cooking would bake it off.... apparently not - so - have never tried any since.

 

to answer the other question - my tinnitus went away 100% a little after 12 months -  in the past 2.5 yrs i've been through a few highly stressful events and each time the tinnitus returned for about 2 weeks but then went away.  so - that seems to be how my body exhibits stress at this point.

 

but life remains beautiful - i work out 7 days a week - which is amazing given i had to totally give it up for a period of time, i work a high pressure executive level job, i travel all over the world, bought my dream house , rescued 2 puppies this summer,  please hold on and know there is something worth living for on the other side of this.  i nearly gave up twice - so so so glad i didn't...... sending healing to everyone .

to answer the question - at what point did i just have to get up  - well - i was single, self employed - no disability insurance - which is why i couldn't take the "time heals all approach" - given the severity of my symptoms - i was headed down a path of years of disability - i believe the strict eating regimen, vitamins and mind set were huge to getting better.  by 6 months - i was back to working part time - by 8 months - full time.  i did NOT work out at all the first 7 months  - the few times i tried caused major set backs,  most people say exercise is necessary to heal - i'm 100% proof it's not.  i didn't have anyone to help me - so - i had to take care of things like house cleaning, laundry, cooking, etc.,  from day 1.  my family didn't believe what was happening to me and felt it was a "choice" to take the approach i did - i feared they were going to try to have me committed and forced on to psych meds.  they now all fully admit how wrong they were and are glad i knew to trust my gut that the path i chose was the right one.

 

no question mindset is a big part of it.  i had to power through and ignore the thoughts telling me healing wasn't possible or that i was too weak to do basic things, etc., 

Thank you so much!

 

Your energy and positivism are truly inspiring.

 

I am very happy for your recovery after such a hard withdrawal.

 

I was a dynamic creative director in an advertising agency and now I sit home waiting for the symptoms to ease. 11 months so far.

 

Because my tinnitus is pulsatile in one ear I can hardly concentrate on anything. It is much more debilitating than the tonal one (which is already lowering more and more)

 

Since you have been in the community much, much longer than me: have you known/heard of cases of people healing from pulsatile tinnitus as well?

 

It makes my benzo anxiety much worst and into a loop.

 

Again, Baylissa says all cases she knows heal eventually, pulsatile too(Jennifer says that as well), which makes me hopeful, but then I still see people posting two years off suffering from it. And it makes me hopeless and very depressed, like I will never come back to baseline, to the life I once had. For some reason I always stick to the worst case scenario.

 

I still have some trouble knowing what foods are good or bad. I have a pretty good general idea, based on your detailed information and sources on the web, of foods to avoid, but some doubts regarding specific ones.

For example: what vegetables and fruits should be avoided?

 

I have read about tomatoes and mushrooms being high in glutamate. Are artichokes ok? Could you help me a bit with that, please?

And fruits? Since I am cutting off all added sugar I rely on fruit to keep a balance. Any particular fruits to avoid because of their excitability? Or most of them should be ok? I eat bananas, apples, watermelon, mangos…

 

And nuts? Walnuts should be avoided? Almonds maybe not?

 

What about balsamic vinegar? is it ok?

 

Are corn chips ok (gluten free)?

 

Thank you so much, really, and best wishes.

Congratulations on your recovery - stories like yours give everyone hope, I am sure.

I have a question: how did you do neurotransmitter testing ?

 

Hi -  to answer the question about fruits and vegetables - i can't say for sure what is good and bad - some of it is trial and error but those with MTHFR gene mutation are supposed to avoid night shades - so google what falls into that group.

 

i personally ate carrots, broccoli, cauliflower, cucumbers  , zucchini and sweet potatoes.  for fruit - i kept it to apples and bananas.

 

google "what foods are high in histamine" - you will find some fruits and veggies on that list - like tomato as an example. 

 

vinegar - i would avoid - google "what foods are fermented" - anything fermented will increase your histamine levels which is not a good thing when you are trying to heal- all vinegar is fermented  -  early on - i could only put olive oil and sea salt on my salad for dressing - later i was able to add in a tiny bit of balsamic .

 

good fats are really important - which again is tough - because things like avocado and coconut oil are high in histamine.  so i just tried to cook with organic grass fed butter to get good fats and of course took a high quality omega 3 only vitamin - nordic naturals makes omega 3 isolated.  omega 6 and 9 can cause issues at this stage of healing.

 

oh - for nuts - i never reacted to them but couldnt have cashews early on but almonds were ok.    so - this is where trial and error comes in but also - early on i started to believe all food was causing reactions and became terrified of food - so at some point i did my research on what was high histamine  - avoided those things and then told myself the other reactions were mental - and literally within days the reactions stopped - i know its hard to hear but a lot of our reactions are in fact psychosomatic .....

 

best wishes to all

I wanted to thank you for this.  This is actually my first comment on the site but had to say if anyone is contemplating if this works or not rest assured this has helped my symptoms immensely.  I went through a 4 and a half month taper that was just terrible.  I kept getting digestive issues and so many foods seemed to rev me up.  I was working with a dietician and holistic doctor for my gut health and honestly felt worse.  I found this post and it just clicked. 

 

I was taking magnesium and cbd to "calm" my nerves as advised by my doctors.  Although they did seem to calm me it was only once I stopped these two supplements that my baseline improved.  I then looked into my vitamin deficiencies and tackled them next.  I cut out all high histamine foods and gluten.  Has it been boring?  Entirely.  But I can notice a difference when i stray from this diet. 

 

I am 2 and a half months off and while not healed I feel like I'm making much faster progress than while I was on my taper.  The b1 and b2 vitamins alongside the b12 and P5P have given me good energy I didn't have before yet not jittery. 

 

Vitamin B3 has given me problems but wouldn't ya know... it acts on the Gaba receptors. 

 

There was a point in my taper when I was SO relieved to get the small windows of stress relief before bed from magnesium and when I though smoking cbd was helping me relax.  Once I cut them out I honestly felt such a better baseline.

Just wondering how you are feeling? 

 

 

i'm doing amazing -  just landed  a  Vice President position  with  a great  company, bought and renovated  my  dream house just about a year  ago,  rescued 2 puppies  this  summer, work out 7 days  a week,  back to looking 10 yrs younger than i am,  traveled  all over  the world in  the  last bunch of months...... feel grateful every day - and don't take a single minute for  granted.  healing from this takes a ton of courage, discipline,  determination, patience, but it's worth it .  i've  received lots of  messages from people saying  they followed  my  eating  and vitamin recommendations and have  recovered so much  faster  than they expected.  i  really  think genetics play  a big role - so  - while this  has  worked  for  me  and many others - there  are  some it  may not work  for  -  although  i must say most people  say they've only tried  one thing versus all of it.....  i don't think diet change  alone would do the job...... although it  certainly helps..... and  yes  - after i  was fully  healed  for a period of  time-  i went back  to eating  whatever i wanted - except avoiding  soy  - and i'm fine. 

 

lastly - because  it  gets lost in so many other threads and  posts - i  cannot  recommend  www.brainsync.com enough.    listening  to the relieve  anxiety  MP3 file on repeat really helped me  get  through  the zero  sleep  and morning  anxiety and many of  the horrible  symptoms.  to this day (2.5+ yrs out) - i still have spurts where my sleep isn't great - most likely  due to perimenopause  - and  i'll put  in  earbuds and lay in bed  and within 20 min i'm out......

 

best wishes for healing  to all

Supplements are not effective if you have damage from these drugs

clearly not true - although  i don't know what you  mean  by supplements - i consider vitamins  different than supplements.  supplements like ashwagandha - holy basil - etc that act on GABA would  not help healing -  only prolong the confusion going on in the brain but things like  B-1, B-2, vitamin C etc can be vital  particularly for those  with genetic deficits.... i've corresponded with and  helped  several people heal and they all used the vitamins  i recommended - i suppose we can't say they 100%  were responsible but they certainly didn't  harm

Thank you so much for this.

 

Your Success Story gives me hope. I will try to implement more and more of your strategies/vitamines over time. I will start with cutting out gluten.

 

I am also German but I never was a big fighter   

 

I'm relatively new in this situation but your case was much more severe than mine is right now. I hope I can beat this sickness if I follow your plan and speed up my healing.

 

 

Thank you for your detailed report. Congrats on your healing! I am currently withdrawing from Valium after crossing over from Ativan.

I am now at 7.5 mg and holding for 6 months. I am currently taking Bupropion, the 7.5 of Valium ( I am tappering that first) Divalproex

and 25 mg of Quetiapine (I'm scared of this one). I have experienced all of your symptoms on the way up and getting on and off of benzos

not knowing what was happening.

 

Right now to wake up from Dival. and Quet. I drink quite a bit of black coffee and take Niacin !000 mg. It really flushes me but I feel better.

My main side effect is burning numb feet that intermittently turn red and my hands. I also have slight wobble side to side and have trouble

standing my ground. I take other supplements as well because of a couple of years of very bad depletion from lake of food. The slight swaying makes me worry about Tardive.

 

I like yourself am 6 feet tall and now about 134 pounds. I am a weight trainer and love to exercise but go up and down in weight. My diet is sort of a mixed bag because my brother has that dept. Any thoughts on how to proceed with I have been doing cuts thus far and have been Queit. 25 mg and making a jump from Valium (doing cuts as of now). Thanks for your time and continued success.

 

 

 

 

 

 

Please use caution taking P5P and/or B6

 

You said you take "P5P (activated form for people with MTHFR) – Seeking Health brand - 25 mg - afternoon"

 

25 mg. is 1,471 % of the Daily Value (DV), or almost 15 times the Daily Value.

 

I got B6 toxicity from taking B6 and P5P.  The RDA is usually less than 3 mg. a day.  In some people, for unknown reasons (one may be prior use of Fluoroquinolone antibiotics such as Cipro, Levaquin, etc.) the excess may not be eliminated and builds up and can cause neurotoxicity.  I had unfortunately taken Cipro and Levaquin in my past.  I will never take them again.  Symptoms of B6 toxicity can be similar to many benzo withdrawal or symptoms.  I will never take a B6 or P5P supplement again.

 

It is easy for most people to get more than enough B6 from food.

 

I understand some people feel their MTHFR status means they need more.  I am barely familiar with that but still urge caution.

 

Please use caution.

 

From http://www.myquinstory.info/what-helps/  "Vitamin B6, although generally considered safe and necessary in low doses, has caused exacerbation of peripheral neuropathy in some floxies even when taken in low doses in supplement form and some of the symptoms, such as tingling, lasted for long periods.  Adverse effects have been documented from vitamin B6 supplements, but never from food sources."

 

There are a couple facebook groups for people with B6 toxicity.  Some have even gotten it from ingesting power drinks that have extra B6 added.

 

 

 

I don’t know how I stumbled upon this but so glad I did. This is an incredible success story. Thanku so much for posting it!

thanks Shayna - when you are so sick - you live for the moment you get to write your success story - at times it will feel like that will never happen but keep the faith - wishing you strength, healing and determination and that soon you will be writing your own story

Thanku so much xx

Hello, everyone! i am looking for this bentonite clay capsules, but couldn't fine them in Europe. That't the only one which seems to be like them, but not sure they are the same. I will be happy to know that someone im EU found them. Cheers I hope youbare well!

https://www.amazon.de/-/en/Bentonit-Detox-800-Detoxification-Extraction/dp/B01KKAJ9OM/ref=mp_s_a_1_4?adgrpid=83739459284&dchild=1&gclid=EAIaIQobChMI1a2kjNeU7gIVGePmCh35vQyWEAMYASAAEgKdn_D_BwE&hvadid=394606829724&hvdev=m&hvlocphy=1001449&hvnetw=g&hvqmt=b&hvrand=16186630725962367601&hvtargid=kwd-298312350438&hydadcr=24374_1949063&keywords=clay+bentonit&qid=1610395624&sr=8-4&tag=googdemozmobi-21

I've enjoyed this post so much and I wish this were me, but a few things frustrate me, one I know my reactions aren't in my head because I get horrible head pressure and sinus pressure which is so miserable when I eat outside my safe food. Also I'm unable to even do any supplements, im trying vit c now but a teeny tiny amount, I dont see how anyone that sensitive and sick could handle that amount of supplements. Maybe im just much sicker and i need to wait and be more patient with myself.. idk, I believe this post 100% its just I don't see how this is possible, especially someone as sensitive as me. I do want to believe I can get here though and with time I can implement these things.........

wow, the time you took to write this to benefit others amazes me. Thank you. I found comfort in your story and your healing is my healing.

 

Best

 

kanoba

Dear All - sorry I've not  been active  lately - 13 months ago I took a new  job at  the VP level of a large biotech company  - right job - wrong company - i worked 75 hours a week  for 13 straight  months  with  practically no break - i could  feel my body  starting to deteriorate - having lost my health before - wasn't willing to lose it for a company that was  not  respecting  regulations  or employee health.... so i resigned - in  a pandemic - without another job - i had a 3 month notice period so needed to get the ball rolling - i guess the upside  is i  survived  it with  no "set backs" other  than tinnitus returning - which is bound to happen  when the body  is working 6am to 10pm every  day  with no breaks......    I learned  to put myself first......i've been off 3 weeks and starting to feel human again  - the tinnitus has  completely stopped in my right ear but continues in my left ...... i still have a  little more time off before starting my next job .

 

I will do my best to start responding to emails i've received but  had to be selfish  for a while and put myself first  .......

 

i wanted to clarify - psychosomatic reactions are very "real" the symptoms are legitimate but they are brought upon by our minds driving the reaction.  food  sensitivities are also very real during this -but i was at a point where  i believe all food was harming me except cucumbers and with  the amount of weight i  had lost - i had to  start eating-  so - i am  saying eat really clean - no  dairy, gluten,sugar, caffeine, alcohol and find at least a few decent things you can eat and stick  to  it- my food  plan was pretty limited and bland and i  was fine eating that way 8 straight months.  i was  perfectly willing to sacrifice eating "tasty" food in order to speed up my healing

 

i did and still do take a lot of vitamins.  as i advised-  you can't just start taking all of them nor  at full strength to start. if you were only to pick  2 - i'd personally be  taking B1 (thiamine) and B2 (riboflavin)-deficiencies in  these  cause  a lot of the symptoms  we experience in withdrawal .  it isnt about how "ill  / severe" you are-  i  had major cardiac issues, seizures, and  weakness so severe i couldn't go up a flight  of stairs yet i managed to heal-  it was the combination of  all the things  i was doing - not just one or two-  i do believe  everyone will heal - those with worse genetics  will simply take longer without strategies  to help those genetic flaws.....

 

i get a lot of questions about hormones -my hormones were below post menopausal levels -i  was unwilling to take artificial  hormones or bioidentical  creams-  it is my personal believe they interfere with healing but  that is just my belief -  i  cold turkeyed off t he progesterone cream i had  been  using for years......i haven't  tried any of  them - i am now 46  and have the hormones  of a 30 year old strictly  through the use  of Vitex  the first 2 years post  withdrawal  and the use of inositol daily at night - which naturally balances  progesterone and estrogen.  my  testosterone  levels were  always low but  went 5 times higher in withdrawal but still low for the medical range - i have no  problem  putting on muscle so  i dont see it as an issue  that  needs  to  treated.  my  DHEA was extremely low- i would NOT try supplementing with that- these are essentially natural steroids-  i am 46 and people think i'm 32  so  clearly it's  not having a big impact for me......

 

a bit of really exciting news - no question the  brain continues to heal more and more  over time  -  while i considered myself healed early on - i still could not take magnesium-i  tried  it at 8 months, 18 months,  2 year and  3 years out and each  time it sent me into acute withdrawal for 48-72 hours...... however - i  am now 3 months short of 4 years off and i tried  it again - and i can take it - ZERO negative effects- so -took nearly 4YEARS for my brain to  not have a  terrible reaction to it.

 

wishing  everyone tons of healing,  strength and determination -  there  is a beautiful life waiting on the other side of this -  it is worth the  suffering to get  there.