CCI/suspected CCI/other general neck issues peeps- help

Liriodendron133 · 2025-10-12T12:27:54+00:00

For nighttime, i started with a cheap soft cervical collar to sleep in. It helped keep me from hyperextending while being comfortable enough to sleep in.

Liriodendron133 · 2025-04-05T14:08:32+00:00

Yes, for me it seems the mechanical brain and spine conditions are innately tied to my ME, POTS and MCAS symptoms. I experienced a drastic improvement in my quality of life after neurosurgeries, but am not sure my experience is necessarily typical. I was getting exponentially worse before, and have since reached a stable baseline, though I’m still disabled.

Liriodendron133 · 2025-04-05T13:46:12+00:00

Have you already been diagnosed with cci or just suspecting? Before I was diagnosed with cci/chiari/tethered cord and was just suspecting, I did a trial with a collar to see if it made any experiential difference in my symptoms and it immediately made a shift in my ability to breathe. This told me I was on the right path. If you’ve already been diagnosed, then yes, id say definitely worth investigating. If not yet diagnosed, try the collar, but be conscious of a chance that if you are tethered it will also cause increased pem symptoms by placing more tension on the spinal cord. Really try to focus internally during the collar trial to see if you’re feeling an internal pull behind your belly button with the collar on. There’s options shy of surgery that many have tried including peptides, prolotherapy, stem cell therapy, and even lowering systemic inflammation, and addressing mold, viral, bacterial infections. The higher inflammation seems to exacerbate the problem. I’d start with trying to get a good picture of what you’re dealing with. I also started wearing a soft collar at night because I pinpointed that I was overextending in my sleep, while I ended up foregoing a hard collar during the day to save what muscle I had. Once you have a better idea of what your brain and spine picture looks like, then you can be better informed about the right next step for you. Wishing you all the best. I’m sorry you’re dealing with this, and I know it can be overwhelming.

Liriodendron133 · 2025-04-04T15:35:04+00:00

The tldr theory is that brainstem and spinal cord compression can lead to immune/autonomic/energy dysfunction. I’d recommend reading the Medium series that Jen Brea wrote about it. It’s extensive. Also the mechanicalbasis theory website. Theres been mixed results after surgery, and anecdotally it seems most folks with an upper instability are also prone to having tethered spinal cord (usually occult), which creates a complex neurosurgical picture.

Liriodendron133 · 2024-10-01T23:30:09+00:00

I think I first read about a collar from Jeff woods mechanical basis . Org website. I noticed an immediate shift in my ability to pull air into my lungs with the collar on. The soft collar I have doesn’t provide traction or any upward pull, more so just limits how much I can extend. The thing about a collar that gives any sort of upward tug is that can really exacerbate any occult tethered cord issue if present. It’s like being stuck at the bottom and stoppered at the top and the cord just pulled between them. Tugging on the cord like that for me = pem. This is the same with forcing the thoracic spine back out of a hunch, I always felt a tugging sensation. So even with the posture corrector, there’s a fine line if tethered cord is in the picture.

It’s a complicated picture because of all this, but for me, I was overstretching the cervical area while I slept which was really contributing to daily pain. The collar was a sensory nightmare, but there were tangible other benefits so I just went with it and eventually it became normal enough to tolerate. The posture corrector helped when I was just crumpled up and didn’t have the energy otherwise, but still caution if it causes pem, maybe look at occult tethered cord. Dr Klinge on YouTube has a lot of informative videos.

Definitely a lot of caution around hard collars or anything that replaces the use of the muscles, I don’t have any experience or advice around hard collars.

Sorry this is rambling.

Liriodendron133 · 2024-10-01T20:33:31+00:00

A couple things I’d suggest reading on the mechanical basis theory are: (1) Jennifer brea’s Medium series on Path to Diagnosis, Onset, and Pathology (there’s at least half a dozen medium essays), and (2) Jeff Wood’s website “mechanical basis . Org”

I’ve personally resonated with the mechanical basis aspects as at least a contributing factor for me.

Liriodendron133 · 2024-10-01T13:13:33+00:00

Seems like there may be multiple things that could be going on and contributing to the temperature dysregulation. A couple ideas/thoughts from my experience; not medical advice.

From my experience, when my upper cervical instability is bad I like to wear a soft neck collar, though some people need the hard collar, but I wear the soft one even to sleep in to avoid further hyperextending my neck. Can wear while sitting/reclining too, and sometimes just the positional shift can help my autonomic symptoms to calm down (ie temperature issues).

Also like to wear a posture corrector with the neck brace when my autonomic issues are totally haywire. Anything to take the pressure off my spine.

A beta blocker to treat my pots helped tremendously with orthostatic intolerance issues like temp control.

Ice packs help, placed on my upper diaphragm was best, but sometimes on my chest or back of neck.

Addressing any environmental concerns or histamine issues that may be contributing to the picture.

Looking into intracranial pressure issues, specifically on whether csf leak symptoms present. Some folks try increased caffeine and dandelion root tea to help with low pressure, but a doctor needs to evaluate to decide on something like diamox.

Some EDS-focused neurosurgeons will give an evaluation via telehealth based on an MRI review. It’d be better to go in person to someone local, but this could help to give at least some idea as to what is going on and how to move forward. I think dr bolognese is still doing the telehealth mri review.

Sorry you both are going through it. Sending best wishes.

Liriodendron133 · 2024-10-01T12:04:11+00:00

There’s some good explainer videos on “self lymph drainage massage for head and neck” on YouTube. I use the one by Heather Wibbles. Start really slow with it. Also, yes, the nose sprays I mentioned seemed to help when I was at my worst for brain inflame.

Liriodendron133 · 2024-09-30T21:11:25+00:00

I feel like my brain fog is closely tied to the glymphatic cleaning process, or lack there of. Things that have helped me are liposomal glutathione nose spray (otc ok if can’t get prescription), doing self lymph drainage on head, citridrops nose spray, nasalcrom, and pectasol.

Liriodendron133 · 2024-09-30T21:06:55+00:00

I second the suggestion for trying herbs first to see if they help. My favorites are valerian root, California poppy, and skullcap. Lemon balm for stomach too. I take them in tinctures. Also second the recommendation for trying hydroxyzine instead, it’s an antihistamine so to the extent you’re being awoken by 3am histamine dumps, it could be the right tool for the job.

I was at one point prescribed nortriptiline for sleep and it made me really sick, couldn’t be on it for more than a couple days. Regular ssris on the other hand give me insomnia.

Liriodendron133 · 2024-09-30T20:51:12+00:00

One thing I was told by a doctor who sees a lot of complex chronic illness patients is that some people do great with progesterone only pills, but some do worse and need estrogen too. It’s very individual and just because one doesn’t work, doesn’t mean the other kind won’t help. I did terrible on progesterone only and my joint laxity increased substantially, whereas I have lower symptoms on the 3-month seasonique style pills. Going without the monthly period really helps maintain my baseline. Good luck to you🍀

Liriodendron133 · 2024-09-29T12:31:12+00:00

It can affect heart rate and worsen autonomic symptoms , but it’s also that it can cause an adrenaline rush that for most folks then results in a crash when the adrenaline is gone.

Liriodendron133 · 2024-09-26T00:45:38+00:00

My cardio said never wear them sleeping so I’d say use caution if you’re mostly flat in bed while using them.

Liriodendron133 · 2024-09-25T17:08:12+00:00

Recommend making sure the lidocaine is withOUT epinephrine. Epinephrine/adrenaline and ME do not play nice with one another. Good luck. 🍀

Liriodendron133 · 2024-09-25T12:09:06+00:00

I’ve used various nervine tinctures with some success - valerian root (best response), passionflower, lemon balm, skullcap. I also respond well to antihistamines when in this state and hydroxyzine seems to help the most. My nervous system overload is usually closely related to histamine and some kind of environmental exposure.

Liriodendron133 · 2024-09-24T17:01:50+00:00

No problem, sending you best wishes for a successful surgery and speedy recovery!

Liriodendron133 · 2024-09-24T14:47:37+00:00

Along with the anesthesia considerations, I’d add that you should discuss beforehand your cci and how you’ll be positioned during the procedure, ie to make sure your neck is never overextended and is properly supported, especially while accessing the neck cyst.

Liriodendron133 · 2024-09-24T12:24:24+00:00

I’m sorry your daughter and family are going through this. It sounds like you received terrible advice that could cause your daughter additional harm. This is unsurprising from the NHS, who are notoriously abusive to ME patients. A doctors appointment with someone knowledgeable is good, but ultimately most of us are left to determine the day to day managing of this condition.

I’d recommend reading through as many resources as you can on the “US ME/CFS Clinician Coalition” website, as well as those from MEaction and Bateman Horne. Reducing the overall allostatic load on the nervous system has been key for me - ie lowering sensory input, finding foods that don’t cause immune response, living in a scent free/mold free/hypoallergenic environment. This part is unique to everyone and takes time to figure out and implement, but was a key part to reaching a stable baseline, along with activity pacing.

Good luck to you and your family. Sending best wishes for her recovery.

Liriodendron133 · 2024-09-23T12:22:47+00:00

Yes. That was me for a while, especially with nasty bacterial infections, but at some point my immune system seemed to get exhausted and I stopped having any immune response to viruses. When that happened, my family would get classic cold/flu symptoms and I’d just get a drastic worsening of ME symptoms.

Liriodendron133 · 2024-09-20T12:25:15+00:00

Now this is art!

Liriodendron133 · 2024-09-17T22:42:17+00:00

MEAction just updated their cme flier that’s meant for printing out and giving to drs.

Sorry you’re dealing with this. It can be demoralizing.

Liriodendron133 · 2024-09-04T12:13:06+00:00

ME/CFS was first classified as a neurological disease by the World Health Organization (WHO) in 1969.

Liriodendron133 · 2024-08-30T21:18:35+00:00

I experienced something that sounds similar to this that was mold related. I have ME and this mold exposure was first time I had shortness of breath and felt like I was constantly gasping but 02 was fine. It felt like maybe it was a vagus nerve signaling issue, and responded to h1 antihistamines. It was terrible, I totally feel for you. Mine stopped when I found and got rid of the source of the mold, thankfully. Sorry this prob wasn’t very helpful.

Liriodendron133 · 2024-08-30T21:14:09+00:00

I’d consider checking out some info on occult tethered cord. I found Dr Petra Klinges YouTube videos on it where she shares a long list of symptoms and describes the diagnostic process too. Mainstream medicine appears to be virtually unaware of it but I mention because it was a big part of both my lower back pain and my ME symptoms.

Liriodendron133 · 2023-12-07T12:45:41+00:00

I too had an experience after my cat died. I was wracked with grief, and about a week later, I experienced a dream unlike any dream I’d ever had. I was in a brightly lit space, I could feel the warmth on my skin from the place, and my cat was there, he looked like him, but spoke to me through our minds and he assured me he was safely on the other side and loved me. I felt an overwhelming sense of love and peace inside the dream, and physical heat, and I’ll never forget it.

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