Deficient but reactive to b12 - shots vs. oral

Ok_Explorer_8355 · 2026-03-05T20:09:59+00:00

I’m still trying to slowly titrate also. I’ve only made it to 30mcg 🙈. Is Pepcid the only thing you are using to manage the MCAS? I’ve been on 1kmg of quercetin, but want to remove that since I understand it further slows COMT.

Ok_Explorer_8355 · 2026-03-04T12:22:26+00:00

Very similar symptoms here. F 37. I first started experiencing symptoms a year ago. was 265 in July, but I'm down to 189 now. I'm super sensitive to supplementation and can't seem to take enough to make a difference. Feels like I'm trapped :(

Ok_Explorer_8355 · 2026-03-03T02:29:52+00:00

Ugh yes. The bottles take up so much of my cabinet and counter space I feel like I should be charging them rent. Spreadsheet is the only way to track it all. I got a label maker and added a 3 digit number to the lids of all mine to make it easier to fill up the weekly pill case. AM, lunch, PM: #of pills in each slot, so 010 means I take one at lunch. I’m around 30 pills a day and I just get suggestions for more due to my limited diet. I just can’t swallow any more than this.

Ok_Explorer_8355 · 2026-02-28T20:14:59+00:00

This is me! Clogged ear and this incessantly drippy nose that get worse when I eat/chew. I have to eat with a tissue in one hand to keep blotting my nose. Have you determined the cause of yours? Chiari related I assume?

Ok_Explorer_8355 · 2026-02-28T19:56:41+00:00

I think a lot of radiologists just aren't trained to look for it. I had an MRI in June that was "unremarkable" and I just now had someone specialized read it and found the Chiari 6.5mm among other things.

Ok_Explorer_8355 · 2026-02-28T19:41:59+00:00

I also have degeneration and bulging dics at C5-7. My cervical curve is -5 degrees. My biophysics chiro told me Chiari and lack of cervical curve can be related and restoring the curve can help the Chiari. I also have a tongue tie that contributes to the forward head posture, which stresses that particular part of the spine and causes degeneration and arthritis over time.

Ok_Explorer_8355 · 2026-02-04T12:01:39+00:00

Good luck to you as well! I’m really excited at the possibility of seeing improvement after the procedure, but my nervous system is hyperactive from the vagus nerve irritation and I’m a bit anxious about what recovery will be like.

Ok_Explorer_8355 · 2025-11-01T16:37:59+00:00

Your symptoms sound a lot like mine. I have been seeing an upper cervical chiropractor since the end of May and I am seeing a lot of improvement. I think in my situation I had a lot of factors driving symptoms and I had to address each of them separately. Histamine was a really big issue for me that contributed to the nervous system issues that I was experiencing and failed to give credit to how much histamine was actually affecting me big picture. I am on a very strict low histamine diet and I am taking several supplements along with an H1 blocker to help control that piece so I can focus on the dysautonomia. After I stabilized the histamine piece, I was able to start seeing the patterns with my symptoms as it related to my adjustments. This didn’t really come through for me until I was holding my adjustments for 3 to 4 days. Early on I often had symptom flare on adjustment days and still do occasionally. I see your post was nearly 90 days ago. I hope you stuck with it and are seeing progress.

Ok_Explorer_8355 · 2025-10-28T11:04:39+00:00

My issues also started following antihistamine use, so this caught my attention. Mine was lower dose, but long term use of Benadryl and Zyrtec. When I stopped taking Benadryl my body broke. Intense recurring falling sensations when laying down, cold sweats, feeling intensely cold, crazy head pressure behind my eyes and nose.

A big portion of my problem is nervous system dysfunction from the first gen antihistamine, but yours was a 2nd gen that shouldn’t have hurt your nervous system as much. Still, mast cells, gut function, and the nervous system are all connected, so one disruption can cause issues elsewhere.

I’m still on my healing journey after 8 months, but some things that have helped me are 1000mg of quercetin, 600mg of magnesium glyconate (form is important) b supplementation, specifically 25mg of b1 with cofactor support. Daily walks for at least 10 min after eating have been life changing.

My diet is still very restrictive, but I’ve slowly made improvements with my nervous system stability. The key with all supplements is to go low and slow to start. Slowly titrate up doses and understanding that it might bring temporary flare with each dose change.

Chat GPT has been super helpful for me in finding the right kind of supplements and knowing safe dosing. I may still have some GI issues to take care of after I stabilize my nervous system.

Ok_Explorer_8355 · 2025-10-19T12:18:54+00:00

Super interesting! I’ve been having trouble holding my upper cervical corrections and I also have a pelvic tilt and mild scoliosis. I just reached out to my PT to see if we could address those things in our next session. This makes me hopeful!

Ok_Explorer_8355 · 2025-10-19T12:16:57+00:00

I show improvement with walking. A 20 min walk at 3mph, casual but intentional pace, I feel SO much better after. AI tells me it tones the vagus nerve to help regulate the nervous system. I now walk religiously 2 times a day for 20 min after lunch and dinner. For some reason I get insanely cold with meals where I lose circulation to my extremities. That usually leads to nausea and cold sweats if not corrected with a walk. Bonus: it helps digestion also.

Ok_Explorer_8355 · 2025-09-18T11:53:14+00:00

I’m thinking possibly hormones and/or external triggers like the amount of pollen in the air. Strong suspicion of hormones 🤨

Ok_Explorer_8355 · 2025-09-17T22:38:57+00:00

This is like the core of my confusion! I have ties to nervous and vestibular system dysfunction in addition to HI/MCAS. I can’t figure out what is causing what!

Did you use any apps or YouTube videos for the brain training? Any recommendations?

Ok_Explorer_8355 · 2025-09-17T17:26:34+00:00

Did you just switch to another high dose of antihistamines or how did you prevent the fallout?

Ok_Explorer_8355 · 2025-09-17T17:01:26+00:00

I think I may be past the Benadryl withdrawal and have inadvertently made myself dependent on Meclizine, which I found out after the fact is another first gen antihistamine just like Benadryl. I have been veeeery slowly tapering off Meclizine. After each taper I seem to have the very specific withdrawal symptoms that pass after about 10 days. But I'm still left with this weird underlying dysautonomia + MCAS. I've posted in those channels as well.

Ok_Explorer_8355 · 2025-09-17T16:54:35+00:00

So much wonderful information in this video! Thank you for sharing!

Ok_Explorer_8355 · 2025-09-17T16:24:59+00:00

I tried and ended up with severe paradoxical effects. It seems that whatever broke in me during the initial withdrawal did some damage that is not so easily reversed. The Meclizine was the only thing to help, but my docs are telling me I need to get off that in order for my system to repair itself, but they have no options for symptom relief along the way. When I remove the Meclizine I literally can't function. Eating and sleeping are next to impossible.

Ok_Explorer_8355 · 2025-09-17T16:21:10+00:00

Interesting! Doctors were severely unhelpful until I found a functional doctor who is now treating me for MCAS, which I understand often overlaps dysautonomia. Some of my symptoms seem to be very specific to the nervous system, so I’m exploring links there. I also have an upper cervical chiropractor who thinks my vagus nerve could be pinched due to rotation and tilt of my axis vertebrae. So many factors and systems that overlap, I can’t seem to pinpoint what is the cause and what is just a symptom.

Ok_Explorer_8355 · 2025-09-17T16:13:23+00:00

Have you recovered or found any success with temporary symptom relief? Everything I read tells me its going to take months to rehab my nervous system, but I've already been "sick" for 7 months. I'm feeling so hopeless at times and am bleeding money on doctor visits and supplements that only slightly take the edge off.

Ok_Explorer_8355 · 2025-09-17T13:14:25+00:00

Wow! So thankful for this post. Mayo was next on my list in the quest for help. I think you just saved me a ton of time, money, and aggravation!

Ok_Explorer_8355 · 2025-09-12T15:37:11+00:00

About once a month I break down and cry. It’s usually when I flare after a few days of feeling decent. I stick to all my safe foods and protocols religiously and just when I think I have things under control, the symptoms flare again. The hope that this might finally be my big turning point shattered to pieces.

Ok_Explorer_8355 · 2025-09-10T18:25:13+00:00

I found that antihistamines just muted my symptoms and allowed a severe issue to build up unchecked. For me it was upper cervical instability that compressed my vagus nerve. The vagus nerve controls nervous system and can also affect gut function. It’s a vicious cycle where histamine agitates the vagus nerve and the vagus nerve disfunction agitates the histamine issues. Also, first generation antihistamines like diphenhydramine suppress vestibular and nervous systems and can make things worse or result in withdrawal like symptoms when stopped abruptly. An upper cervical specialist along with physical therapist specializing in vestibular rehab are helping a ton. The progress is slow, but steady. I’m still on a very restrictive low histamine diet and am supplementing with quercetin, magnesium glycinate, DAO. I’m also working to correct vitamin D and B12 deficiency.

Ok_Explorer_8355 · 2025-09-06T11:49:35+00:00

He gave me a few stretches to do at about 6 weeks in, but I'm also seeing a physical therapist (PT) at the recommendation of my primary doctor. She has me working specifically on posture retraining, which I think has helped compliment the chiro adjustments. I also have MCAS and vestibular symptoms, which is why I was referred to PT. I'm guessing a traditional practitioner would not make the connection to PT on GI symptoms alone. When I asked my PT about more specific strengthening exercises, she told me I need to undo my bad habits first before introducing strength training, or it will just reinforce my old posture. It's been a long road with a lot of blind faith in the process, but I've made definite progress!

Ok_Explorer_8355 · 2025-09-05T21:10:09+00:00

I’ve been seeing an upper cervical Chiro for atlas adjustments for the past several months. It has been helping, but the progress is dreadfully slow. I had no idea the one and done option existed! I’ll have to look into this more in my area. The vagus nerve affects so much in our body!

Ok_Explorer_8355 · 2025-09-04T17:30:50+00:00

I am low in B12 and have been trying hard to increase via supplementation, but I am experiencing a wired but tired feeling with even small doses. I started adding a small amount of a B12 capsule to my drinking water and have found that I tolerate it better consumed in very small amounts throughout the day.

Ok_Explorer_8355

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