I'll be very interested to know how this goes for you
@winterschlaf, as you continue to fiddle with it. If you get any clearer about it, please post and let us know. Can you elaborate on the 'intense results?' I had a very hard time trying to describe what mine were, but they were not pleasant. Both in the neck and overall. Still trying to figure out what the actual mechanism might be. We can help one another with this, I am sure.
Right, so a bit of a small data sample size because I wore the collar only for 60mins the first day -- a lot of which time was spent on fitting & adjustment -- and 35 mins the second. Was intending a fitting only but was really surprised how much occurred during that time.
A very long answer follows - forgive me I was always a terrible editor, moreso since my brain stopped working as it once did! Hope something here is useful to you / anyone reading considering these things themselves.
The good:
* As soon as the chin plate was in place and the weight of my head supported by somewhere other than the base of my skull / my c-spine, I made an internal groan of relief.
I have become aware lately of moves I make unconsciously to try to alleviate pressure in the same areas - things like holding taut a handful of my hair scrunched up by the roots near the crown, which takes some of the weight of my head into my hand.
The collar replicated that mechanism, and it was like taking the weight off of a sprained ankle. Conversely, once I removed the collar, it felt like the same thing in reverse, which was a little frightening, as my neck felt very 'unprotected'.
The overall feeling of the collar was the same I get wearing my hand braces (stiff fabric gloves with a metal skeleton which hold my wrists and thumbs in neutral, ameliorating the inflammation of tenosynovitis, from my thumbs seemingly subluxing) - that an area with injuries in the soft tissue is being immobilised, protected and prevented from further injury. Still sore but no sudden moves.
Actually most of the positive effects were only obvious on removing the collar. Within the first 120 seconds of doing so:
• The volume of my tinnitus increased massively, like someone inexorably turning up a dial
• Same thing for pulsatile tinnitus
• My ears, especially my more impaired left, felt as if they were filling with liquid, becoming muffled and pressurised, filled with the echoing of my pulse
• Same goes for the pressure in my eye sockets / brow / behind my eyes
• All the above symptoms, plus the "fading" that comes from changing head position, returned
• A sense of calm, purposeful wellbeing dissipated (saw you and
@Malea make reference to this re: traction,
@Jyoti. Now I know what you mean!)
Anomalies - need further investigation:
• For the first time in a long time, I couldn't track my own heart rate well through listening to my pulsatile tinnitus, so I measured it seated, standing, and moving around by my bed.
It was: c75 sitting, c105 standing, c115 moving around. Usual measurements are: c90 sitting, c140 standing, & to be quite honest, I'm too scared to measure it moving around. So, 140+. A reduction of 15-25bpm.
Thing is, I took my pulse again later, collarless, and it was still the same as collared. Either the effects of the collar lingered, or my POTS has improved lately through upping my liquid intake by 1L daily, and I hadn't noticed! Will test further.
• That night, I slept through the night for the first night I can remember. I was very confused in the morning when my symptoms diary was empty of entries after 00:00.
Usually I wake to find anywhere between 4 and 10 vaguely recalled entries, detailing wakes with cold sweat, night terrors (audio/visual hallucinations); nausea, liver, neck and joint pain; neurological symptoms like choking, biting tongue, numb hands and feet, twitching limbs etc.
The next night (after wearing collar for 35 mins during day), I woke once around 0400, then was woken by a family member accidentally dialling the house phone at 0445 and after that I couldn't sleep. So that was an incomplete experiment.
Last night (didn't wear collar at all during day), I woke 4x with symptoms, which is average.
• The reason I didn't wear the collar yesterday is I had an almost supernaturally low pain day. It was extraordinary.
These can come out of the blue every 6-8wks, so I don't know if it was really related to sleep, and if that was in turn related to the collar.
Pain became a major characteristic of my M.E. since an allergic reaction to fluoroquinolnes last autumn, which also hastened my cranial and neck symptoms.
But I got to experience a day with "just" standard M.E. symptoms, but low pain levels (neck, head, liver, nerves, all joints and muscles are usually at moderate pain level, with spikes of strong).
My best guess is that (at least) one of a few things going on here:
1- this was just one of these random low pain days which feel like a fluke and are gone as soon again (feeling pretty bad today on account I spent all day sitting up in bed, using my screen yesterday! Ha)
2- 90minutes of collar use over two days somehow miraculously allowed enough inflammation to go down / the free flow of blood, lymph and cerebrospinal fluid into/out of my head for that really short period of time (tend to think of my head as being at the end of a garden hose with a kink in it due to vascular / intracranial pressure symptoms) was enough to make really stunning repairs
(? Seems unlikely but also the uninterrupted nights sleep and the low pain day were quite marked).
3- mood has even more of a bearing on symptoms than even I realised. I was elated and excited after the reduction in cranial symptoms I experienced wearing the collar; nothing else having brought any relief this last year.
Ok but also, the bad -
Particularly notable on the second day, when I donned the collar, less as a fitting exercise, and more because I was in a lot of pain and seeking relief:
• Firstly, the redistribution of my head's weight to my lower jaw and clavicle area, was really sore. As much relief as it gives to my c-spine and base of skull, it's going to be a challenge over a 6+ hour car journey.
• Wearing the collar straightened and lifted a neck which has been bent forward, and a head which has been hanging and cocked to the left for several years. It was very odd to have such a towering perspective on my room.
The rest of my skeleton has zig zagged to fold and hold my frame in such a way as to compensate for this degrading head & neck position; my body clearly prioritising keeping my eyes at the same level despite the angle of my head.
The collar undid this years long odd angle in one fell swoop, and the un-concertina-ing of my deconditioned, long bedbound body, was strongly painful in places.
I very quickly began to limp as my right leg untwisted itself at the hip, and my right ankle has felt very tender and on the verge of injury since. I've been tiptoeing around, hoping not to feel a sprain.
The places where weak supporting muscles were suddenly asked to hold my skeleton straight (waist, ribcage, hips etc) have remained stiff, sore and strained just from those 90mins over 48hrs.
Conclusions:
• I am going to be a very sore person indeed when I arrive in Manchester on Sunday
• I will potentially be protected from the jostling of the journey in the ways I hoped
• Should I ever regain some ability, I'm going to need the patient (as in, accomodating) support of an osteopath or physiotherapist, in order to spend time out of bed. I knew this intellectually, but feeling the extent of my deconditioning yesterday was daunting
• Probably getting ahead of myself here, BUT: If the collar does anything at all to mimic even a tiny part of the stabilisation of a fusion surgery... I feel like I want to say, I'm in.
While wearing it had little effect on PEM, weakness, body pain, malaise etc (POTS, to be determined, MCAS symptoms are still a new observation for me), but I felt perhaps up to a 30% reduction in many of my more bothersome cranial symptoms. Which to me would be sufficient gain to consider undertaking.
Hope it's alright to make such a statement here - I know it's an emotional subject for all effected, and hope it's reaching the people who want to be reached, by being contained to this thread.
It's been foremost in my mind for ten months or so, and the results of this collar test were quite unexpected in that area.
Comments and feedback _most_ welcome.
W
