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Member Journeys Start to Finish

4/30/22

New to this group, to make a long story short I had been supplementing with 30 mg of B6 for one year and a half. I started feeling symptoms of restlessness and anxiety along with tinnitus and lightheadedness and dizziness. I’ve also felt like there’s electricity pulsing through my body my arms are always restless and so are my legs. I didn’t pinpoint what it was until 30 days ago when I stopped taking b6 supplements. I had never had anxiety before in my life I am 47 years old. The doctor put me on Klonopin in February. It wasn’t until March 30th that I figured out it was the B6 and stopped taking it. Now 30 days later my anxiety is just as bad as ever. Dizziness is preventing me from driving and making money, I feel like I’m going to pass out at any moment. Has anyone had a similar experience? If so when did your anxiety begin to get better?

5/11/22

Recoil has brought the worst Anxiety and Panic Attacks of my life. I’m 41 days out of supplementation and about 8 or so days into the protocol and seeing some improvement. Dizzyness is all but gone with protocol.

For those that have gone through rebound, are Anxiety and Panic Attacks symptoms prevalent during this time as well? If so, is it as bad as recoil? Consensus in this group seems to be that symptoms in general aren’t as bad in rebound. Wondering about Anxiety specifically.

6/12/22

My 3 remaining symptoms at 9 weeks are Dizzyness/Lightheadedness, Restlessness in arms and legs, and Anxiety. (None of which are as bad as weeks 2-6)

Questions for those with similar symptoms:

What happens when you eat high B6 foods? Do these symptoms flare? Is it right away? Does it take a couple days?

Have been RDA or less for 6 weeks or so, will be tempted in the next couple of days.

7/8/22

Week 13 from last supplementation. 10 weeks on Protocol. This is my first test since stopping, don’t know for how long I’ve been within normal range. I think I’m closer to Lyndon’s story from the website. Haven’t had a week without symptoms although my symptoms are less in number and frequency as time passes. Have had a few good days here and there but not a distinguishable break after recoil. At this point, should I shoot for rda or slightly below? Thoughts?

7/31/22

I’m 4 months off B6.

The “anxiety” brought about every time in my life that I have supplemented with B6 is very unique. It feels unnatural. Very chemical. Not organic. And it has started fairly quickly after beginning of supplementation (weeks), persisted mildly for a year or so, got worse after stopping (recoil), and is still around at 4 months although lessened greatly by hydration protocol.

See, I’ve experienced the type of anxiety throughout my life that comes from for example: Having a loved one sick and dying for days/weeks/years. Not having enough money to keep your family housed. Being mugged at knife point and shot at. Experienced large earthquakes and aftershocks. Being chased. Being sued for large sums of money, unjustly defamed publicly. Having my child in a perilous situation. Substance abuse withdrawal. Jail. Supernatural occurrences 👻. Public speaking. Having to climb to great heights for work while having a terrible fear of heights, daily. Not closing the big deal/loosing large sums of money. Health anxiety/waiting for test results/health panic attack etc.. the list goes on and on.

THIS (B6T anxiety) is different. It’s better defined in my opinion as terror. As a chemical, unnatural terror. Unfazed by deep breaths or cognitive behavioral therapy. As if someone has you on an IV of adrenaline provoking a fight or flight response that lasts hours/days. That is around even before you wake up, and as soon as you do, it’s there in full force. It’s not like a panic attack that runs it’s course. It’s persistent and seems to be constantly FUELED ⛽️, and the fuel supply doesn’t run out. 

The reason for my post is to get this off my chest and to comfort anyone that can relate in knowing that they’re not alone. 

It’s scary, it’s dark, it’s been the worst thing ever, but at least at 4 months, and thanks to the advise of this group, the anxiety has lessened and the fuel seems to be running out slowly.

8/26/22

Feeling like I’m in rebound now (4 months on Protocol) 5 months off supplements. I’m wondering if smack dab in the middle of range is ideal. Diet is about 80% of RDA.

10/3/22

For myself at least, I can honestly say that after having gotten significantly better in terms of agitation/anxiety/panic/restlessness during months 3-5. In month 6 it has been just as bad, if not worse than months 1-2. It has become overwhelming and debilitating. I have missed work and social obligations. If this is rebound, then at least for me, it’s as bad as recoil. The only consolation is that I don’t have most of the other symptoms along with it. If anyone can relate, please comment below.

1/18/23

I tend to eat the same thing daily. I calculated an average day of eating while I was toxic. This was before supplements. 25 mg in a magnesium, 2mg in a multivitamin and a couple of Propel Waters at .04 each. I did this for a year and a half. Symptoms started at the very beginning (anxiety/restlessness, lightheadedness). They would appear maybe once a week. I was running 4 miles daily at the time, and lifting weights as well. Things came to a grinding halt when I became sick and dehydrated, continued supplements but stopped activity. Among a bevy of other symptoms anxiety restlessness and lightheadedness went from once a week mildly, to 15 on a scale of 1-10 and 24/7.

2/6/23

On month 11. As I’ve posted previously, a slew of terrible symptoms are gone thank God. The only 2 that remain are Lightheadedness, and a restless/agitated/anxiety. Used to be, these symptoms were prevalent in the morning (months 1-8). Now, they come around almost exclusively after meals. Much has been said in this group about developing histamine problems as a result of B6T. However, I have no typical symptoms. No heartburn, rash, heart palpitations, runny nose, flushing, watery eyes, congestion, wheezing, bloating, nothing GI. Nothing. I understand, histamine still could likely be the culprit regardless. Haven’t been tested yet to check my levels, but every time I get adventurous with food (all low B6) about an hour and a half later, I’m so lightheaded and anxious that I am barely able to function.

My question to those that have been through the histamine issues is:

How long before I can have a slice of pizza again? Does anyone have a timeframe? Seems like it’s common among us during rebound, but when, if ever does it end?

2/26/23

Muscle twitching, eyelid twitching at 11 months? Anyone relate?

3/14/23

In the next couple of weeks I will hit my 1 year mark since the last time I took a supplement with B6 in it.

A few observations:

Your greatest friend is TIME. For some it’s 6 months, for others it’s 2 years or more. I can see that. Nothing will help more than time. Be patient.

Salt, water and potassium is key. Hearts of palm, dried apricots, almonds or almond butter, coconut water are all relatively low in B6 sources of potassium.

RDA B6 is also important. Chronometer is your friend.

Do not assume that any given food is causing symptoms. While this may be the case, it could also be coincidence as symptoms come and go seemingly at random. I needlessly painted myself into a food corner causing me more grief than necessary. Sometimes, you’re just in a cycle, a wave and you just have to ride it out. There will be ups and downs.

Exercise. It’s also super important. Start gradually. Don’t push it.

Cold showers. I don’t know what excess B6 combined with a dehydrating event does to your vagus nerve, or to the production of neuro transmitters, but it ain’t good. It’s well above my pay grade. I can tell you however, that daily exposure to cold water can help with both these things. 1 to 2 minutes full cold, full body, works wonders for me. It seems to build too. The effect grows with consecutive days, weeks that you do it.

At just about a year, of these symptoms: Lightheadedness/dizzyness/vertigo, anxiety/panic, restlessness, electric buzzing in extremities, internal vibration, extreme light sensitivity, bounding pulse, tinnitus, whole body tremors/chills, insomnia, ocular migraines, involuntary muscle twitching everywhere, gait/balance problems, depersonalization/derealization, mild neuropathy, nerve pain in hips. Only mild anxiety remains, and it’s gradually dissipating.

Medication. I’ve been pretty open about having to take anxiety medication throughout this process. Not everyone gets that extreme anxiety/restlessness/agitation, 24/7 fight or flight. But for those that do, medication may be necessary. Do not feel shame, use with caution and most of all respect.

I’d like to thank Beth Smarzik and everyone else in this group that has answered my questions, and shared their experiences. Without you guys, I don’t know where I’d be.

My journey is by no means over. Almost there though, I can feel myself coming back in a few, but ever more frequent precious moments at a time.

Noel B.’s Response to a member with similar issues 3/14/23:

Greetings from the other side. There is an end. It’s so hard dealing with all of your symptoms and you feel so alone. Hold on. Don’t get frustrated if it takes a while, everyone has a different timeline. Be patient, lean on others experiences in this group. It wasn’t until after a year that I turned a corner where an end was in sight. For some it’s sooner, for others it takes longer. Feel free to reach out if you need. Blessings.

4/26/23

No significant dietary or hydration changes since last July. Restarted cardio exercise October 6th with very little increase in intensity until current day. Interesting results. Will now move on to weight training. A little background: Been off B6 supplements for 13 months, on protocol for 12. As of now, of these symptoms: Lightheadedness/dizzyness/vertigo, anxiety/panic, restlessness, electric buzzing in extremities, akathisia, internal vibration, extreme light sensitivity, bounding pulse, tinnitus, whole body tremors/chills, insomnia, ocular migraines, involuntary muscle twitching everywhere, gait/balance problems, depersonalization/derealization, mild neuropathy, nerve pain in hips. Most days zero remain.

Noel B.’s Final Post on Anxiety 11/20/23:

For the record. I am 19 months since my last dose of supplements. Throughout this journey, before this week, I’d gotten sick with a bad cold or flu 3 times. Each time, I experienced a resurgence in symptoms. Agitated, fight or flight, nerve pain, extreme lightheadedness pots type symptoms, trembling and the list goes on. I feel like whatever damage was done from B6T acted to sensitize my nervous system. Upon fighting a cold or flu, things would all come back with a vengeance. 

Well, I’m happy to report that this week I’ve come down with something terrible. I know, sounds funny but hear me out. I have a really, really bad cold/flu that has given me a fever, horrible body aches, congestion and shortness of breath. As bad or worse as the other 3 times. BUT, not a single B6T symptom in sight. None at all. I’m on the other side of this cold/flu whatever so I can say assuredly that it’s the case, symptoms did not return. Glory to God.

In terms of anxiety, I’m still on a small dose of medication as my doctor insisted on a long and protracted taper. But, considering I’m constantly reducing my medication and it’s so much less, this cold/flu should have at least made me feel a bit agitated, some anxiety, but no. Nothing. I don’t feel my nervous system is sensitive anymore. 

To all going through it, there’s hope. Again, there is an end.

3/24/24

Stopped B6 Supplements March 30th of 2022. First test 6 days later was 64.9 on 2.1-21.7 scale.

My experience is well documented here, look me up for details if you’re interested. Found this group, went on an RDA B6 diet, and started hydration protocol at the end of April 2022. Stayed on RDA B6 for about 15 months. During that first year off, being VERY strict about hydration and RDA, my tests kept climbing. Still within range, however climbing none the less. Why? Well, because B6 was stored in my muscle, and during that time it was slowly being released with exercise. The numbers don’t lie.

One month shy of my 2 year anniversary off of B6 and after 6 months of eating chicken, avocado, potatoes, beef etc to my heart’s content, yes 6 months of a normal to high B6 diet, I am within range. Mind you however, I still drink quite a bit of water, still add 1 gram of salt in pill form and hit RDA potassium daily.

This I am posting to show all that are at your worst, that there is an end. I wouldn’t wish the experience I had with B6T on my worst enemy, but, it did change who I am for the better, and I am grateful to God for having seen me through it. Thanks again Beth Smarzik and all that helped me along the way.

5/8/24

B6T Anniversary – So today marks my 1 year B6 Toxicity Anniversary. A day I couldn’t fathom that I would make it to. On this date last year, my new (and 4th) neurologist called to tell me my blood work results. He said, “Most everything looks good. Do you drink energy drinks by chance?” I said that I drink pre-workout everyday and sometimes a Red Bull. He said, “Stop right now. Your vitamin B6 is toxic level. It’s 200 times what it should be!”

That started my healing journey. However, it was another 4 weeks before I saw him again for a follow up, and he said it can take 6 months, sometimes a year to heal. And that’s it, he didn’t tell me anything else…just stop supplements and come back in 3 months for more bloodwork to see if B6 went down. I was on my own. It was another couple months until I would find the Understanding B6 Toxicity website by researching “Vitamin B6 toxicity treatment” and then eventually found this group. That’s when I learned about the protocol and that at the time I was dealing with recoil and flares and had no idea. The day I found the website and eventually this Facebook group was the day I credit to finally finding true healing and help. My doc finally found the toxicity, but this group gave me the path to healing and gave me hope for the first time in 5 years.

You can search this group for all my posts (use the magnifying glass up top and search my name) and see most of my story and my journey. The cliff notes of my journey: I was toxic for at least 5 years (my symptoms exploded in Dec 2018), went undiagnosed the entire time, had multiple ER visits, 4 neurologists, 2 cardiologists, gastroenterologist, rheumatologist, and multiple MRIs, CT scans, X-rays, ECG’s, swallow study, endoscopy, colonoscopy, nuclear stress test, multiple blood panels for autoimmune, diseases, markers, etc….all came back negative and clear. All my ECGs were “textbook perfect” per the doc.

My toxic symptoms were every single one on the website aside from maybe one or two. I had them all! At my most toxic I had radical blood pressure spikes (max got to 180/98 twice), high blood pressure (average 134/90), elevated resting pulse (90’s), heart PVCs and arrhythmias, anxiety and panic attacks, swallowing issues, neuropathy in both feet, numbness in hands, burning in back, left buttock, and left thigh, cervical (neck) issues, vision issues, tinnitus, vertigo, brain fog, insomnia, sore joints and IBS issues. Those were the consistent and worst ones. More autonomic than anything. I was overweight as I was depressed and eating way too much and eating junk and had breathing issues walking. I just was not healthy, even though I exercised consistently.

I was working and doing projects while sick and thought I was dying. I did one film in February at the height of my toxicity and shot 3 days with insane vertigo and burning feet. In between takes, I would have to sit down to get my bearings, then jump back up and try to get through my lines. I watched a Lifetime series I did and I thought, “Geez, I was having heart arrhythmias and my BP was way high during this whole shoot!”, I was so sick. Doing concerts were almost unbearable, but I’d belt out an hour show and jump around on stage and then run to the van and pass out, contemplating telling my band mates to take me to the ER. Thankfully never had to. I was scared daily. And I went through all of it alone. Being a single guy, that part sucked. It was hard to tell friends and family, “I’m dealing with some unknown health issues…I don’t know what to do.”

But as of today (12 months, 365 days I healed)…majority of those symptoms are gone. I’m off blood pressure medications after a year and a half and my blood pressure is the best it’s been in 10+ years (I attached screenshot to show). My resting pulse is usually around 65 bpm average. At night it gets in the 50’s. The only symptoms really that I’m dealing with post rebound are some mild neuropathy still on days I workout my legs hard, some swallow issues lingering and that’s it. I feel 90% better today. I did 50 minutes of crazy ab workouts and heavy weights and then 30 minutes on the elliptical yesterday. No flares after…but I’ll hate laughing, sneezing or coughing all day today I’m sure haha.

I’m back to working out 6 days a week, atleast 1.5 hours a day, but mostly 2 hours a day. I do 15 minutes of yoga daily, 45 minutes of weight training and 30-45 minutes cardio. I also meditate 15-30 minutes a day if I can. I’m staying strict to the protocol, and will until I’m symptom free for atleast a full month. I stick at RDA for meals (getting in 2,000-2,500 calories and 150-170g protein), drink atleast 3 liters of water, 8oz of cherry juice (after workout), 8oz of coconut juice and 12 oz of pedialyte daily (6oz first thing in AM, 6oz last thing at PM works for me). And also way too much coffee haha. I’ve lost 25 lbs total in this past year. I’m doing moderate cardio and can’t get my pulse over 135 on the elliptical now. I’m also back to sleeping atleast 6 hours a night without waking at 2-3am, but the other night I got 7:15 hours sleep (on Zzquil still, but hey…). I have my energy back, but still get my lazy on 🤣

I feel so much healthier, better and life is amazing and hopeful now. Days seem brighter, even when it’s pouring down raining outside. I even look healthier and better than I have in a few years. My skin doesn’t have the weird texture it did during toxicity and rebound, and even after working out hard I don’t ache. I’m back to headbanging some during band rehearsals, and doing exercises I long thought were over like squats and running.

I still have some hurdles to leap, and I know I will have some down turns in the future, some flares will happen, and I’m still dealing with swallow issues. But swallow issues were one of my first symptoms, so it should be one of my last. However I’m better prepared for those down turns physically, mentally and emotionally.

It’s been a very long year, and a bumpy road to travel…but the road I’m on now for this journey doesn’t have any pot holes, and it’s all down hill. There is light at the end of the tunnel…and there’s hope! Thank you to everyone that has commented on posts, read my OVERLY long explanations and posts, answered my own questions, supported and cheered me on, but even more so gave ME hope during my recoil and rebound and my worst times. Even when I’m healed, I’ll still be here helping and supporting as many as I can! Much love and hope to all my B6 survivors 🤘🏼😁🤘🏼

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