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

[[...]]

Same! It was awful. Depression and anxiety still linger for me.

I have begun to recognize the fact, at a rather late age for such a realization, that I also have OCD, which plays havoc with the emotions, unless you learn how to deal with it (which I am presently trying to do). 

[[Sa...]]

Good luck!❤️I know you can conquer this!

[[...]]

Thanks very much, and HAPPY NEW YEAR! 

[[Ca...]]

Thanks so much for posting your success story and detailing what worked so well for you.

 

Would you please list the supplements you took?  Did you take Vitamin C?  I did not see much in your diet other than broccoli and maybe kale that provide Vit C.

[[SS...]]

Hi Carol Jean - let me put together the list but yes - i was taking 3000 mg of vitamin C daily before going into withdrawal.  i was on it the first 6 weeks but then became afraid of supplements after reading so many posts that they were harmful so stopped - 8 weeks later i went through micronutrient testing which showed i was very vitamin C deficient.  I did some research because i know vitamin c can stimulate histamine and my levels were through the roof - so -i came to learn that Twin Labs Vitamin C is a non citric acid source of vitamin C and i had no problem tolerating it.

 

I will put together my list of supplements and post it a little later.  I do believe they were all very helpful to my healing!

[[Ca...]]

Thanks so much!  I have tried different Vitamin Cs and I react to all of them.However, I have been having a quarter of a lemon in my finer/tumeric tea daily to get Vit C and am pretty sure that lemon is high in histamine.

 

I finally found a probiotic I can tolerate.  it does not have acidophilus in it and is recommended for people with autism.

[[...]]

Thanks so much!  I have tried different Vitamin Cs and I react to all of them.However, I have been having a quarter of a lemon in my finer/tumeric tea daily to get Vit C and am pretty sure that lemon is high in histamine.

 

I finally found a probiotic I can tolerate.  it does not have acidophilus in it and is recommended for people with autism.

 

Which probiotic?

[[Ca...]]

D-lactate Free Probiotic Powder by Custom Probiotics.  If I recall correctly, Pure sells it.  I bought it online .  I started with the children's dose and worked up to the adult dose. It is expensive.

[[SS...]]

ok - so - here is my list of supplements.  I should say that I was on all of these vitamins before withdrawal.  I started them all when very sick with Lymes and found that they really supported my overall health.  I was on them the first 6 weeks or so of withdrawal and then stopped everything due to fear they were harming me.  Things got much much worse.  Once things got so bad I couldn't envision it getting any worse - I decided trying to resume the vitamins was worth the risk given just how bad things were.  I always take the B vitamins in the morning since they can be stimulating and i want the effect to wear off by bedtime.

 

Bentonite Clay - 5 capsules daily - away from food and my supplements and thyroid medications

Potassium - 99mg - three times a day with each main meal

Vitamin C - 500mg - three times a day with each main meal

Vitex (for estrogen dominance) - 450mg - once in the morning before 830am for best effect

Adeno B-12 (specific for people with MTHFR gene defect) - 750 mcg in the morning

Folinic Acid (specific for people with MTHFR gene defect) - 250 mcg in the morning

CoQ10 - once in the morning

Omega 3 Nordic Naturals - at lunch

Lycopene - 20mg - morning and evening - stopped the acne pretty darn fast

B-2 - morning

Chromium - afternoon - this helped regulate blood sugar swings

Benfotiamine - 150mg - morning and evening - helps neuropathic pain and circulation

Astragalus - 500mg - afternoon - stopped the itching and rash dead in its tracks

P5P (activated form for people with MTHFR) - 25 mg - afternoon

Pantethine (activated B5 for people with MTHFR) - 300mg - morning

Zinc - 15mg - in afternoon

Vitamin E - 400 IU - evening

Super K - evening

Thorne Cortine - for adrenals - in morning

Niacinamide - only added back in after month 6 - since i know it can impact GABA and wanted to hold off on it

Vitamin D - added back in after month 6 once lab testing showed i had low levels - worked my way up with a liquid form to 2000IU - it was difficult to tolerate at first

Black currant oil - first half of menstrual cycle  - helped with the hair loss

 

so - that is it.  it may seem like a lot but it's not too difficult to manage.  I added most of these back in around Month 4 when things were truly awful and by month 6 i was significantly better.

[[Vi...]]

Congratulations to make it to the other side! So happy for you!

I'm almost 20 months out and trying to eat well, get some natural thyroid medication and natural projesterone cream but my symptoms are still very bad! Burning squeezing painful thingling head/ scalp is my worst symptoms, and is triggering my anxiety. Pain all day every day over 2 yeas now. Im losing hope I ever going to heal.

I'm 56 years old and going trough peri menapouse too what make it much harder to go through this hell.

Reading your story give some hope, even if you healed much faster then many of us.

I will try your low histamine diet to see if is going to help me.

Thank you again to come back to try to help us who are still in this hell.

Love and healing to you all.

Vica

[[SS...]]

Hi Vica - there is no question women in their 40s and 50s are hit much harder in withdrawal simply because our hormones are already starting to head south....... i am so sorry things are so rough for you at 20 months.  don't lose hope.  progress can happen really fast.  i think of the difference between month 4 and 6 and it was night and day.  i would definitely give the low histamine diet a shot as well as eliminating gluten if you haven't.  anything you can do to give your brain the best chance of healing more easily.  i will pray for your healing! 

[[Vi...]]

Hi Vica - there is no question women in their 40s and 50s are hit much harder in withdrawal simply because our hormones are already starting to head south....... i am so sorry things are so rough for you at 20 months.  don't lose hope.  progress can happen really fast.  i think of the difference between month 4 and 6 and it was night and day.  i would definitely give the low histamine diet a shot as well as eliminating gluten if you haven't.  anything you can do to give your brain the best chance of healing more easily.  i will pray for your healing!

Hi SSR thank you for writing me back

I'm gluten free for over a year now. No sugar, alcohol, coffee and dairy. Very low carb and high protein and veggies, some fruits. Still in severe anxiety, burning painful thingling head/ scalp.very low energy.

Trying to hold on to hope this is not something permanent. :'(

 

I have a question for you. Did you make lunch and dinner fresh always? I'm readying if you leave out your food for 1 hr is become high histamine and after few hrs become very high histamine food.

Do we have to make our food fresh each time?

Thank you for the pray!

Vica

[[SS...]]

Hi Vica -  the suffering is awful.  I am so relieved to have it behind me.  I pray you will start to heal faster.  The histamine cooking is a REAL PAIN  - yes - they say anything that is left over for even a few hours starts to develop histamine - so - i literally was cooking 3 fresh meals per day which wiped out whatever small amounts of energy i could muster up.  but it was my only job back then since i wasnt working.  i felt i had to do it.  when i bought my fish, chicken, turkey, meat, etc.  i would divide it up into portions while it was raw - zip lock it and freeze it and then would just take out the portion i was cooking.  it was a ton of work.  not to mention the food bill was very high.  but i do feel it helped me tremendously and paid off.

 

it's funny you bring up the scalp pain as  that is a symptom i forgot about and had not recorded in my journal for some reason.  but i did have it - and thankfully it was intermittent for a few weeks and then stopped.  but it felt like someone had tried to pull all my hair out.  my scalp was soooooo sore.  it is truly crazy all the physical symptoms that come with this.  not that there is any good case of withdrawal but the people who are not having physical symptoms are fortunate.  of course i was far more interested and concerned with getting the CNS symptoms to improve before worrying about the physical ones. 

 

I do believe everyone heals - wish the time frame was at all predictable.  i kept saying i just wanted to know how many months or years it would be - even if it was long - at least i would know there was an end date and could relax more about it.... it is a terrible process to go through but once you come out the other side - life will be truly amazing!  i promise!!

[[Vi...]]

Hi Vica -  the suffering is awful.  I am so relieved to have it behind me.  I pray you will start to heal faster.  The histamine cooking is a REAL PAIN  - yes - they say anything that is left over for even a few hours starts to develop histamine - so - i literally was cooking 3 fresh meals per day which wiped out whatever small amounts of energy i could muster up.  but it was my only job back then since i wasnt working.  i felt i had to do it.  when i bought my fish, chicken, turkey, meat, etc.  i would divide it up into portions while it was raw - zip lock it and freeze it and then would just take out the portion i was cooking.  it was a ton of work.  not to mention the food bill was very high.  but i do feel it helped me tremendously and paid off.

 

it's funny you bring up the scalp pain as  that is a symptom i forgot about and had not recorded in my journal for some reason.  but i did have it - and thankfully it was intermittent for a few weeks and then stopped.  but it felt like someone had tried to pull all my hair out.  my scalp was soooooo sore.  it is truly crazy all the physical symptoms that come with this.  not that there is any good case of withdrawal but the people who are not having physical symptoms are fortunate.  of course i was far more interested and concerned with getting the CNS symptoms to improve before worrying about the physical ones. 

 

I do believe everyone heals - wish the time frame was at all predictable.  i kept saying i just wanted to know how many months or years it would be - even if it was long - at least i would know there was an end date and could relax more about it.... it is a terrible process to go through but once you come out the other side - life will be truly amazing!  i promise!!

Thank you SSR! God bless you and wishing you a very happy healthy life!

Love vica

[[Ma...]]

Thank you for writing your story.. It is definitely the best I have ever read.... and amazing...

 

I have been wondering what is up with my brain;;;; 23 months of a Ct. Klonopin use of only 4.5 months

 

and I'm still a mess.. but not as bad as first year

my ongoing nightmare is the pressure in my head is unreal..........................................

I cannot even sit in a chair normal.... because it hurts.

I sit with myhead forward.

 

What are histamine foods.............................hopefully not the little on my menu!!!!.

I am so limited already

just eggs. chicken, beef,  spinach, banana, coconut milk,,,,,,,,,,,,,, apple cider vinegar,,,,, vegetables..... potatos.. and cucumber....

 

anyway,, thanks for the xmas gift

and congratulations on your healing

 

you sure went through a ton

as I have not had surgery

 

but do relate to having neck issues.....etc... God Bless

[[SS...]]

Hi MarieELLA -  thanks for your kind words.  I had hoped my success story would help people despite it being a tough read. 

 

Food was definitely one of the biggest concerns for me - at some point my level of fear was so high i was practically eating nothing - convinced everything i was eating was harming me.  after becoming a skeleton and passing out too much - i had to start eating regardless of the fears.  this is where the personal growth happens - i guess.  in any event - i put together a list of things that were gluten and dairy free to work from  and also did lots of googling about what the high histamine foods were - if the food didnt fall into one of those categories - i told myself it was safe and whatever reactions i perceived i was having  - would have happened anyway - and i got over that hurdle.

 

so for the food you've listed below - unfortunately - spinach, coconut and apple cider vinegar are all high in histamines and from reading the symptoms you are still struggling with - i suspect histamine is the culprit .... on the first page of my success story someone asked me what a daily meal plan looked like for me - so - i wrote it out - perhaps take a look and see if you can give that a try for a while.    normally apple cider vinegar is extremely healing but that along with probiotics - really kick up histamine which becomes counterproductive to any healing qualities it may have.  years ago with the lymes i used lots and lots of ACV and it did wonders for me but for now - can't touch it!

 

Best of luck in continuing to heal   Feel free to send me an email if you have any more in depth questions as i don't necessarily check the forum frequently

[[Ca...]]

What do you think about coconut oil --is that also high in histamines?  I use it twice a day on my oatmeal for the fat.

 

I also use a probiotic that someone recommended that is supposedly non glutamate targeting.  It is recommended for people with autism.  It's D-Lactate Free probiotic power.

 

Thanks!  So interesting to read about the diet and symptom connection.  I know many of us are very careful about what we eat.

 

Carol

 

 

[[Ma...]]

ahh. thaNK YOU for writing back!...

 

I guess I will need to switch to Kale!!!

 

is red meat bad as well..

 

gosh... even the coconut oil is not good

yikes

 

I am so afraid to try supplements

but wonder if the clay would be good

and do you recommend a brand..

 

also.. I was drinking 3 large glasses of orange juice daily

 

what kind of oatmeaL?

 

sorry so many ????????

 

annette

[[SS...]]

i know - isn't it crazy how careful we have to be with the most basic of things but i found by being so incredibly restrictive - it really did allow me to heal.  for so many months - food had no taste or enjoyment for me - i couldn't even have a simple thing like some ketchup .....

 

so - to answer - yes coconut oil is high in histamine.  when i got so thin - i did have to compromise at one point and put grass fed, organic butter on my oatmeal to get some fat.  that is safer than the coconut oil if you need the fat and don't want to increase the histamine.  i used to do oil pulling with coconut oil religiously before withdrawal and had to stop!

 

kale is a good option over spinach - i had to get used to the taste..... i certainly loved spinach but not worth the histamine.  i ate tons and tons and tons of zucchini to keep my level of greens up

 

for probiotics  - i stopped what i had been using before withdrawal which was a multi strained one in addition to s boulardi.  i still can't tolerate a probiotic for the most part although resumed the s boulardi and it seems to be ok - its actually not a traditional probiotic.  i have read there are certain strains that can increase GABA but given any probiotic will increase histamine - for now - i've just given up on them.  probably once i am 1 full yr out post last dose i will try again.

 

red meat isnt bad although i guess not a ton if you are concerned about cholesterol.  i have it once a week - sometimes twice.  we do need lots of protein to heal the brain but early on - i had to cut protein shakes because they were too revving - around month 5 i added them back in and the first few days were tough but then i was ok after that and still have 1 per day!

 

for oatmeal - anything organic is probably fine.  initially i was having only plain oatmeal but now i have the apple cinnamon and it doesnt bother me.  ive slowly been able to bring things back in - like ketchup - so exciting!!

 

for the clay - any food grade bentonite clay should be ok - i would start with it in capsules because making and drinking clay water is no fun!! i do because its more economical but to get started - i'd use capsules to ensure you can get it down!!  most people see improvement within a week

 

 

 

[[Ti...]]

SSR,

 

You are very kind to respond to so many with questions. I have a few too, if you are willing.

 

Firstly, many thanks for your detailed post. My goodness, you were on a long, arduous healing path! You are a true warrior for keeping the faith, as most of us know how difficult it is to stay focused and positive.

What a wonderful Christmas gift, and on top of a healed and joyful life! I am so happy for you!!

 

A number of kind "warriors" on this site have pointed me into the right mindset, as this illness is very insidious and unlike anything I've ever experienced. Plus, there are very few medical people who know how to truly guide us! So I calmed myself down early on, and began to believe that I will heal. It is day to day, as I tend to have anxiety flares.

 

Early on, I had horrible insomnia and many zero sleep nights. I would lay there and my mind would vibrate like a top! Intense anxiety would come and go. Of course, I was losing weight due to lack of hunger! Seriously, I started to lose weight when I first started on my taper! But not sleeping really sapped my desire to eat. What a vicious cycle. When I could put together a few hours, I would sometimes feel ravenous the next day! But the weight was up and down, and any gains I had were quickly lost. I was so worried, and really thought I was going to die!

 

As time progressed, I learned that the "organic, clean" protein shakes I was consuming, like I was recommended by medical people, were causing the whirring in my head. I realized I needed to abstain from all free glutamate! That has really helped! MSG is in almost all processed food, and those protein shakes are highly processed!! I decided to eat only real food-clean meat and wild caught fish, fruit and vegetables. I have had to add in more gluten free grains to keep my meager weight up. I also eat nuts which I have soaked and dehydrated, and homemade coconut milk (we recently bought some green coconuts from Florida). I stopped buying the almond milk we liked because it contained an msg ingredient.

 

Here is what I have devised for my healing. I am gluten and dairy free. I also realized I needed to eat every 2-3 hours! Plus, I buy organic-especially the "dirty dozen."  I have been making shakes with fresh greens and berries, with added nuts and non-dairy milk. I put different kinds of kale, beet greens, sometimes a fresh beet, organic frozen berries, and sometimes a banana for sweetness.I usually eat 1-2 eggs in the morning, with either oatmeal or quinoa, with berries and nuts on top. Or I will make sweet potato pancakes. I have cut out the maple syrup, and am careful not to eat any sugar. I drink 1-2 cups of turmeric tea in the morning, then water for the rest of the day. Lunch is leftover dinner, and dinner is meat, salad and steamed broccoli or some other veg. I have been reading the Wahl Protocol and have been incorporating her principles. I use just olive oil instead of butter or dressing, and saute with coconut oil. Heck, I have been brushing with coconut oil or baking soda, because toothpaste is so toxic! I even use coconut oil on my skin, usually mixed with an essential oil.

 

I really haven't been aware of the effect of histamine. Sleep is much better, but I still have good nights and not so good nights, where I wake up and don't get back to sleep for awhile. It could be the grapefruit I was eating at night! I don't really get itchy, dizzy, nauseous, or have swelling. But I do get headaches occasionally after eating. How would I detect histamine intolerance? Do you recommend the 23 and me genetic test?

 

Here is another question. I initiated going to the GI doc over my weight issues.I have scheduled a colonoscopy/endoscopy for next week. The doc thought it best to do it to check out my reasons for having trouble gaining weight, plus I am due for a colonoscopy. She will use proprofol to put me under. I realize the prep will cause me to lose weight!  Your experience with weight loss resonated, as I have the same issue. It is becoming clearer to me that the gaba receptors in my gut need to heal, and maybe I ought to wait on the testing. What is your take on that?

 

I am going to acupuncture 3 x per week. My practitioner is a Chinese doctor, and very supportive and encouraging. He is trying to bring my body back into balance. I have been going for 6 weeks, but I know it is a gentle treatment. Since I have made pretty good progress, I don't want to stop at this point. It is covered by insurance so far.

 

I have made an appointment to start LENS neurofeedback at the advice of my therapist. That practitioner thinks she can help my anxiety and sensitivity. I will report back any positive results I have. (From the internet:Low Energy Neurofeedback System (LENS) is a unique type of neurofeedback that nudges the brain out of maladaptive brainwave patterns it is stuck in, allowing it to restore homeostatis, to reset itself for optimal performance.) Since I have so many anxious thoughts, I am hoping this might help.

 

Sorry to go on and on. Thanks for reading, and congratulations on your recovery.

 

 

 

 

 

 

[[SS...]]

Hi Tigereye - thanks for your kind note.  I hope I can offer some words of wisdom but I suspect that what worked for me may not work for everyone.  We can see - daily - in the postings how one person takes a supplement and has a great response - someone else can take it and have a terrible response - our genetics and underlying health status play such a huge role in all of this. 

 

I will try to touch on some of the things you've asked about.

First - I will say neurofeedback is an invaluable tool in recovering your brain from this mess.  I would not recommend trying it until you feel truly stabilized because it's not inexpensive and if the brain is going through dramatic shifts - i'm not sure if the gains you make will hold or if they could be lost, etc.,  once i was fully stabilized i started it and have had tremendous improvements in focus , memory and just about everything

 

Accupuncture - i tried this early on - i think - for me - it made things worse - most of acupuncture focuses on things like repairing the liver - which is a great thing but it can lead to the release of tons of toxins our bodies are not prepared to handle with how fragile they are.  so - i stopped it and found i got much better - it was causing too much detox for me.  i fully believe in it as a healing modality but it was just too aggressive for me at the time i tried it and my insurance did not cover it so i couldn't afford it for the long term

 

juicing - normally a great great way to heal - but again - this is a very "cleansing" technique and it could end up overwhelming the body.  i had tried things like the body ecology diet in the past and found they made me worse not better.  i have since learned that i have some pretty detrimental genetic SNPs related to histamine - so - it now makes sense why i had a poor reaction to these sorts of healing protocols

 

the Wahl protocol - again - a great strategy but depends on how much detox it will cause and your histamine status.  she seems to recommend a lot of fermented foods.  for anyone with a-fib or histamine issues - fermented foods including probiotics - will make things much worse.  i think the protocol is also very much based in Paleo concepts - usually paleo helps people but as i learned - my IGF-1 levels were sky high so paleo was making that worse!

 

histamine - so - i was surprised to see my histamine levels because i was not itching or having any kind of rash the way so many benzo sufferers have.  i thought histamine meant itching!  guess not.  i cut all high histamine foods and had dramatic improvements.  coconuts are controversial - some say they are low in histamine others say they are high.  i had been a huge lover and user of coconut oil and had no problem with it before withdrawal but had a terrible time with it once in withdrawal.  coconut oil kills a lot of bugs - so - i think for me - it was causing a lot of dye off that before withdrawal - my body had no problem processing but just couldn't manage in withdrawal

 

eggs - i had no problem with eggs before withdrawal and had really been counting on them as a source of daily protein and biotin for me, etc., but after a long enough battle with the acne - i gave them up.  i have learned that eggs are tough for anyone going through overstimulation responses - so - i think they can be problematic for some.  i now eat 2 eggs once a week without issue but couldn't have them daily anymore.

 

quinoa and other grains - so - eliminating gluten is great - quinoa would normally be a good option but i've also since learned if you are struggling with SIBO - which I do because of the high and long doses of antibiotics for the lymes - any kind of grain is fueling SIBO......

 

i know - i know - it gets crazy and you have to wonder what on earth you can eat - so - for me - i just picked a set group of foods - as i laid out in an earlier post - and just stuck with those for 4 months.  it was boring and awful but it seems to have worked for me .  i did have oatmeal which is a grain.  i think you have to just pick one or two bulk forming type foods when you are losing weight and just stick with them.  i ate tons and tons of gluten free bagels.  that got the weight back on pretty fast for me.

 

i know there is so much emphasis on healing the gut  - and for a good reason since that is where the majority of our neurotransmitters sit - unfortunately - the traditional way of healing the gut is going to backfire for anyone with a histamine sensitivity and glutamate powder will sen you off the charts if you are in a stage where the glutamate receptors are still unregulated.  i chose the path of using bentonite clay to heal my gut - its unbelievably benign and has worked for me.

 

23andme - right now its on sale for like $159 - its a good idea to know your genetics in general.  if money is tight - its not going to produce miracles having the information.  but if you have certain SNPs it will help you to understand why you may be doing so poorly - for me - it was at least peace of mind to understand why i had such a dramatic reaction to these meds and why healing was so tough.  they are always changing what SNPs they test for - i had my genetics done 8 yrs ago before 23andme so knew i had MAO, COMT and MTHFR but i tested again through 23andme because my other source had not done the histamine or liver detox genes.  as it turns out - 23andme - at the moment - is not doing MAO - so - that is a huge loss.  MAO is a gene that has to do with build up and break down of serotonin, dopamine and histamine.  so its a huge impairment to have but the current 23andme test doesnt look at that SNP right now.

 

i cannot emphasize enough - the importance of thoughtful lab testing.  had i not done it - i would have had no idea my thyroid was doing screwy things - my hormones had gone off the rails, my IGF-1 was through the roof, etc.,  having all that information allowed me to customize my supplements in a very targeted way to help fix the deficiencies or excesses which took a ton of stress  off my body and allowed it to heal.  i also paid out of pocket for neurotransmitter testing and having that info was extremely useful.  i am so excited to say at 8 months off benzos that my glutamate levels have finally dropped tremendously!  this means those nasty receptors have finally down regulated!!!!  i have had a little bit of gluten here and there and no longer have a bad reaction!  if i had not eliminated gluten - i think it would have taken much longer for that to happen.

 

i have worked with a few other women in this forum and as it turned out - they had some pretty serious imbalances - so - had they stuck with the time will heal philosophy - they never would have gotten better.  if your are severely hypothyroid or have estrogen dominance or severe vitamin D deficiency, etc., your symptoms may be from those things and not benzo withdrawal.  i am not saying run out and go nuts with labs.  if you are in the early stages of acute - it is tough and it just will be regardless but if you are 6-12 months out and have seen zero improvement - sometimes its good to find a qualified person to help you test some key things .

 

last week was my 8 month anniversary off benzos for withdrawal round #2.  life continues to be amazing.  sleep is getting better and better.  unfortunately no improvement - still  - with the tinnitus but i just keep white noise going to block it out.  i didnt have it before this mess so i do believe it will eventually go away.  mine is a high pitched whistle.  it stinks but i have reclaimed my life and i can deal with it!

[[om...]]

SSR1975 THANK YOU for sharing all the details of your story, and for all the details you have shared after that as well! The success story is very encouraging! And all the details are very helpful.

 

Until I read this post, I had no idea about the the histamine connection. This is very critical information!! Thank you so much for sharing it. I have already figured out (the hard way) that some foods / drinks don’t seem to be going down so well! In fact, they can severely flare up symptoms! Today I had a big flare up after drinking a small “welcome drink” on the plane home. It was a citrus / lime drink, and now I’m realizing it could have been the citric acid in there! :/ I’ve noticed I’m sensitive to sugar as well, but this was a more extreme reaction than sugar produces. I have been in hell for hours.

 

I just had to reinstate to 0.5 mg Xanax nightly for sleep. Tried to CT it about 45 days ago after 5 months of on/off use — not every night, but definitely more nights than not. Didn’t think i was addicted! Started developing withdrawl symptoms immediately, and for weeks struggled to understand what was going on with me. It wasn’t until I was having borderline seizures every night when I tried to go to sleep that I made the connections to why I had been feeling so bad. Unfortunately, the reinstatement dosage of 0.5 mg is no longer cutting it! I seem to be in a state of withdrawl, because my body needs more of the drug now. I don’t know whether it’s better to go up in dose and then start tapering? Just to get withdrawal symptoms and flareup down, or just start tapering from here.

 

Also, a question. How much of this newly acquired severe food, stimulant, alcohol, etc sensitivity is due to withdrawals, vs due to my now damaged GABA receptors not functioning properly? Even if I go up in dose before tapering, I’m guessing these symptoms and sensitivites don’t just magically go away? Or do they? Is it possible to go up in dosage, mitigate sensitivities and withdrawl symptoms, and then just do a slow taper down with less problems? I’m officially lost and confused as to what I need to do to heal and just start feeling better again!! Going UP in dose on the devil pills sounds like something I would like to avoid! I tried to go down to half a pill, figured: I’m already suffering! How bad can it be... and it was the worst night of my life :'( Too much of a jump!

 

I’ve read success reports about rapid detox via Gabapentin, which at first sounded promising! But I fear what those Dr reports don’t tell you is the potential long term effects and/or problems that might create. Yes, patients got off benzos quickly. But how did they feel in the months / years that followed?  I will say though that gabapentin is the only thing that mitigates the withdrawl symptoms. I only discovered it a week ago and I’m already afraid to use it too much. I want off ALL drugs!!

 

Thanks for reading and sorry this got so long!  

[[Kr...]]

The choices are ultimately yours but I suggest you read The Ashton Manual around the longer half life meds being able that be tapered without the danger of tolerance withdrawal.  Diazepam has the little ngest half life which is why Prof Ashton recommends it; my motherinlaw was put on Prozac which also has a long half life.  Like you I attempted to reinstate and taper but I’d already hit tolerance so was going cold turkey anyway so just stopped thinking it would be over in a mth or two.  Receptors can heal.  Hopefully others will chime in but you could also copy and paste your comments into a new thread to draw out some expert opinions....

[[SS...]]

Kristina - i imagine your comment is to ombass?  as i mentioned - i cold turkeyed twice given i had no information and followed the instructions the doctor gave me - had i understood the how high the doses i had been given were - i certainly would have done my research and found the ashton manual but it was too late by the time i understood what was happening.

 

to ombass - your question about withdrawal vs damaged GABA receptors - they are one in the same.  from what i've gathered in reading tons of posts here in BB - it doesnt sound like there is any "easy" path off these meds - even people who did long slow tapers still seem to have a brutal few months once they stop.  i personally wouldn't up dose and try tapering - you are already suffering and on the path to getting off the meds.  could you consider a switch over to valium at this stage - i suppose so if you have a doctor willing to write the script.  you would have to go to the ashton manual or the tapering part of this site to find out what would be an equivalent dose - it might be 5mg valium but i'm not sure.

 

histamine is just one aspect of what we go through.  i didnt have the crazy rash everyone was talking about - at least not at the beginning - so - my food intolerance wasn't in the form of a rash but rather major flaring of anxiety or insomnia. 

 

my approach was very extreme - to eliminate so many things - but i believe by doing so - i wasn't adding to the already harsh imbalances created by withdrawal which allowed my body and brain to heal much faster.  those receptors cannot grow back overnight or even in a few weeks - i think it will always be a matter of months.  its not just a chemical imbalance but a loss of the receptors while other receptors like the glutamate ones - had upregulated.   

 

i am now 8+ months in the clear from withdrawal round #2 and life is great and i am now able to eat just about anything without a reaction - which is truly amazing.  i haven't tried alcohol yet - i am waiting till the 12 month mark and then will try a TINY amount.  it seems people try to jump back in - mentioning several glasses or cans of beer - i am going to try a very small amount, when i feel ready, and see what happens.  i miss wine but not willing to re-enter the hell i fought through. 

 

best of luck in getting through this.  it won't be easy but the end result is amazing and worth it

[[om...]]

SSR1975 thanks for the quick reply! Unfortunately I had this exact experience not once but TWICE before, but both times I had assumed I had gotten either an intestinal parasite or a bacterial infection. Both times I CT'ed nightly Xanax after about 2 months of usage. Most of my symptoms in those instances were gastrointestinal related. Severe food sensitivities that I NEVER attributed to benzos, until literally the last couple days here of reading and learning on BB. Just like you, my sensitivities were not a rash or in the gut so to speak, but a big flaring of anxiety... that I often treated with what? More benzo's of course! WOW, thinking back, it was no wonder I was so messed up for so long.

 

It took me a LONG time (5-ish years) to heal from the first time. The second time, it was thankfully only about 3-4 months, which I am now realizing is a very short time! Those months were BRUTAL at first, but got better after the first couple months. But in that regard, I just mean the food sensitivities. I don't think my brain fully healed in that time. I will say what was different about this time I was PLOWING in a very heavy duty probiotic, VSL#3. I really do think that played a critical role in my healing! It's available at Costco in their Pharmacy section, or on Amazon. Its like medical grade or something, they don't sell it at regular shops.

 

However, this most time seems much worse, the Kindling Effect is clearly coming into play here! In the past, I mainly had the food sensitivity symptoms. This time, I have this rattly/wired/fried nervous system feeling, especially when it gets time to go to sleep. Then I get the dreaded electric shock / jolts / jerks that yank me outta bed over and over as I'm trying to get to sleep. Those are by far the worst withdrawal symptom! I am scared to go to sleep!

 

The Gabapentin is the only thing that calms those down... but after a week of taking that, I've realized I don't wanna be taking that. It's just another drug I'm going to have to get off of, I am not sure how long you have to take Gabapentin to develop a dependency, but I've heard getting off of it is no walk in the park. I will admit that a part of me still wonders if a "rapid detox" via Gabapentin is possible... just use it for a short span, with a plan, just so I could just get OFF these damn benzos as quickly as possible! I feel like the longer I am on them, the more damage they are doing to me. Especially considering that people who do slow tapers often have a hard time, even afterwards. I feel like the quicker the path through the fire, the better!

 

Which leads me to agreeing with you in regards to NOT going up in Xanax dose before tapering. I am trying to get OFF these things, and thats just going to prolong it. I think the less of them I consume, the better. I asked my Dr about changing to Valium for the taper, but she denied me. I might ask her again next appt, but she totally downplays the addiction and the tapering. Quite the opposite, she just said I need to increase my dose! She also offered me Ambien (no thanks!) and gave me Mirtazapine (Remeron) for sleep which I only tried once. It seemed to work OK, i just hate messing around w these mind drugs! I dunno what sorta weird chemical changes are going on in my brain when I take them, and neither do the Dr's. It's like playing Russian roulette w your brain, just very much not a good idea. That being said, I might break down and try it again tonight because I want to try to not get dependent on the Gabapentin! I wish I knew if it was OK to trust that drug!! Many people say it helped them, many people say its evil. Considering how insidiously evil benzos are, I'm pretty leary of anything even remotely similar!

 

All this being said, I am so happy for you that you are free and clear and feeling good! I know I can get there, too! Thank you so much for the support and encouragement!  In my original experience of alcohol/food/coffee/everything intolerance, i could always tell very quickly if i could tolerate something. Within seconds. One sip of a drink...or coffee... and... NOPE! Anxiety would race up. Always thought it was "leaky gut syndrome," but turns out: benzo brain syndrome!

 

Kristina, I have indeed checked out the Ashton Manual! Its an excellent resource! I plan on asking the Dr again for valium on next visit, she denied me first round. I DO know that receptors can heal! I am a testament of that... or i was! But I know I can get back there again! And I am so much happier understanding what I am up against, vs shooting in the dark!