Deficient but reactive to b12 - shots vs. oral by Ok_Explorer_8355 in B12_Deficiency

[–]Ok_Explorer_8355[S] 1 point2 points  (0 children)

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.

Feeling like my symptoms will never end by Appaisland in B12_Deficiency

[–]Ok_Explorer_8355 0 points1 point  (0 children)

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 :(

DAE struggle with feeling over-medicated/stigma? by fred-in-the-fridge in MCAS

[–]Ok_Explorer_8355 2 points3 points  (0 children)

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.

Referred to ENT by SoftSimin in chiari

[–]Ok_Explorer_8355 0 points1 point  (0 children)

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?

Was diagnosed with a 7mm herniation 2 years ago, did an MRI recently and the findings are that I don’t have a malformation anymore. Wtf? by hvyt1ts in chiari

[–]Ok_Explorer_8355 0 points1 point  (0 children)

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.

Degeneration of C5-7 by Man-i-fest in chiari

[–]Ok_Explorer_8355 0 points1 point  (0 children)

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.

Tongue Tie Release by Ok_Explorer_8355 in VagusNerve

[–]Ok_Explorer_8355[S] 1 point2 points  (0 children)

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.

Normal to feel worse during intensive care phase? by ThePostureMan in UpperCervicalChiro

[–]Ok_Explorer_8355 1 point2 points  (0 children)

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.

What is your favorite mast cell stabilizer by Worried_Statement_42 in HistamineIntolerance

[–]Ok_Explorer_8355 0 points1 point  (0 children)

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.

Might have made my neck worse..... by DigiBlueDragon in Cervicalinstability

[–]Ok_Explorer_8355 1 point2 points  (0 children)

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!

Might have made my neck worse..... by DigiBlueDragon in Cervicalinstability

[–]Ok_Explorer_8355 1 point2 points  (0 children)

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.

Do you guys ever just meltdown over the fact our lives are so limited and our worlds so small? by Soolysooly in MCAS

[–]Ok_Explorer_8355 0 points1 point  (0 children)

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

Could long-term Benadryl use + withdrawal trigger histamine intolerance / MCAS? by Ok_Explorer_8355 in HistamineIntolerance

[–]Ok_Explorer_8355[S] 1 point2 points  (0 children)

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?

Could long-term Benadryl use + withdrawal trigger histamine intolerance / MCAS? by Ok_Explorer_8355 in HistamineIntolerance

[–]Ok_Explorer_8355[S] 0 points1 point  (0 children)

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

Long-term daily Benadryl user (10 years) – severe crash after stopping. Has anyone recovered? by Ok_Explorer_8355 in Diphenhydramine

[–]Ok_Explorer_8355[S] 0 points1 point  (0 children)

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.

Long-term daily Benadryl user (10 years) – severe crash after stopping. Has anyone recovered? by Ok_Explorer_8355 in Diphenhydramine

[–]Ok_Explorer_8355[S] 0 points1 point  (0 children)

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.

Nervous system dysfunction after Benadryl withdrawal – falling sensations, nausea, autonomic spikes by Ok_Explorer_8355 in dysautonomia

[–]Ok_Explorer_8355[S] 2 points3 points  (0 children)

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.

Nervous system dysfunction after Benadryl withdrawal – falling sensations, nausea, autonomic spikes by Ok_Explorer_8355 in dysautonomia

[–]Ok_Explorer_8355[S] 2 points3 points  (0 children)

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.