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BarbaraParticipant
I know some of those symptoms very well. Can I ask about the strangling/choking sensation, is it like your throat swells up for 30 minutes or so? If so, I know what caused mine, it was looking from side to side whilst my head was looking down (in flexion), e.g. when flicking through a magazine. I had to avoid the movement in order to avoid the consequences.
With regard to your MRI, I can see some extra fluid above the brain, as many of us have. You don’t have blatant Chiari but you do have what are called, low-lying cerebellar tonsils, see the post below for further info:
http://prettyill.com/forums/viewthread/712/P15/#3988
Regarding your neck, I can see a loss of lordosis (the natural C curve of the neck) in the neck bones that are visible (down to C4). There’s also a measure of anterolisthesis between C3 and C4 neck bones (top bone more forwards than the bottom one). I have annotated it below.
BarbaraParticipantMy Neurologist is perplexed himself and not sure how to help me, although he is trying to find out what’s going on. My blood pressure rises dramatically when I stand up and I feel that my breathing is laboured when I’m moving but improves if I’m completely still. I have neck and shoulder pain, and a feeling of pressure on the top of my head. . . . . . . . All these symptoms started after a minor head injury
I have also suffered these things above after a head and neck injury. After 5 years of suffering, I got rid of the neck and shoulder pain (and top of the head pain) by wearing a Philadelphia collar (and body brace initially – but now just the collar). I started off with POTS, where my heartrate went up substantially upon standing but, over time this has developed into my blood pressure going up instead. The post below gives a possible explanation:-
BarbaraParticipantNo, not tried the new ones. My motto, if it ain’t broke, don’t fix it.
See the post below for deeper analysis of the collars I’ve tried:-
http://prettyill.com/forums/viewthread/575/#2883BarbaraParticipantHi Grace,
Yes I too have heard that said however, I can only go on my own experience, which is that I have been wearing a Philadelphia collar, with washable liners replaced daily (essential), for nigh on 9 years, 24/7 and in my case, each day when I remove the collar for cleaning, I have the same level of use of my neck muscles, as I had 9 years ago. In fact my neck feels stronger, much less painful and far less fragile, so one could say they are better than 9 years ago.I do appreciate that I have never spent more than a few minutes without the collar though, so perhaps am not qualified to comment on the affect that longer stressors would have on the head/neck but with the way I feel, I can’t see it being a problem, if ever I’m lucky enough for the ligaments to heal effectively. I would never regret wearing this collar at all, for it’s brought me great comfort, where for years there was only pain. Granted, it was cumbersome to start with but that’s of little consequence when you consider the great benefits it brought.
Your head and neck can still move within the boundaries of the collar, you don’t just ‘slump’ within the collar, it’s just that your movement is restricted and the collar guards you against many possibly dangerous manoeuvres, so it’s functionally supportive.
Regards
Barbara
(UK)July 23, 2016 at 8:54 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #5995BarbaraParticipantNot used an electronic tracker at the same time, no but 10 years or so ago, I undertook my own study of blood pressure and pulse, whilst carrying out a variety of activities during the day, trying to get to the bottom of the problem (or at least to try and understand what aggravated my symptoms) and hopefully to find out what was going on in general. I think I did it for about 3 weeks, it was quite enlightening. I’ll try and find it when I get chance and post some of my findings, it might help someone somewhere. In the meantime, here are some other posts you might find useful:-
http://prettyill.com/forums/viewthread/320/#1697
A little more detail:-
http://prettyill.com/forums/viewthread/613/#3068Physical heart ‘signs’ that should be looked for
http://prettyill.com/forums/viewthread/292/P15/#2614Pulse pressure, working out Stroke Volume and Cardiac Output per activity
http://prettyill.com/forums/viewthread/833/#3955Low pulse pressure and circulatory failure
http://prettyill.com/forums/viewthread/879/#4185BarbaraParticipantSorry, just don’t have time to annotate it but looking at the back of your head, the distance between C0 (head) and C1 (neck) and also C2 for that matter looks too far apart. In effect, it’s stretching up the back of your head and tilting your head forwards and possibly affecting your brainstem. The vertex you mention is what would normally be the top back of your head, if it was in it’s normal position.
BarbaraParticipantJust wondering, could you possibly have cranio-cervical instability ?
I’m just considering the mechanics because, I have increasing hypertension when I stand up and the drawing below (sorry it’s very basic!) depicts what happens to the head quite often when people are standing. You are no longer looking straight ahead most of the time and will often be looking down, with your head in ‘flexion’ quite a lot of the time – this in itself, if you do have cranio-cervical instability, can cause a restriction at the cranio-cervical junction, of the cerebro spinal fluid flow.
The way this restriction happens, if you do have cranio-cervical instability, is this:-
The weight of your head (which is very heavy) is affected by gravity and slides, ever so slightly forwards, this closes the gap between the opisthion (back of the opening through the skull) and the back of the dens (uppermost peg-bone of neck) in a pincer-like movement, putting compression on the structures that pass through the skull opening, i.e. brainstem, blood vessels etc.http://prettyill.com/forums/viewthread/712/P45/#4612
This in itself would cause both high blood pressure and tachycardia, as mechanisms to try to keep the brain oxygenated.
Adding to that, if you’re unfortunate enough to have such additional anatomical differences as a short clivus, or a retroflexed odontoid, this can further add to the compression, when your head is in flexion.
http://prettyill.com/forums/viewthread/712/P15/#4079
Try and do as much as you can in a seated position and when you are upright, try and keep your head ‘squarely’ over your shoulders, to see if this improves things.
July 14, 2016 at 6:56 pm in reply to: My daughter: 2 years of IIH (???) & diamox has not been good so far #5988BarbaraParticipantHello,
Quick reply – just wondering, did Sophie have an MRI, to look for the cause ?In the meantime, checkout Magnesium in the search box, there’s much about Magnesium Deficiency on this website, including a video by Dr Diana. It’s all eye opening and very informative and could be a useful tool in getting Sophie back to good health.
July 14, 2016 at 6:39 pm in reply to: Strange non-healing (or slow healing) sores – NOTE: not for the squeamish! #5987BarbaraParticipantOh, and I’ve started to make my own bath bombs with bicarbonate of soda, citric acid, peppermint oil (using ‘grapefruit seed oil’ as a carrier) and binding it all with witch hazel.
They don’t seem to like peppermint!
July 14, 2016 at 6:33 pm in reply to: Strange non-healing (or slow healing) sores – NOTE: not for the squeamish! #5986BarbaraParticipantI just thought I’d do a quick update, I have had some success with a more recent, rather extreme and cumbersome but somewhat effective treatment method, so just thought I’d pass it on (for those desperate!). Remember I said that I didn’t get any sores where there was friction or pressure, pressure such as that from support hose ? Yes, I decided to ‘adapt’ some support hose for my arms (I simply cut the foot off and the lace top off an old pair) and wore these under long sleeved jumpers, stretching them over the top of my shoulders and tucking them under my bra strap! Before I did this, I made my own ‘elastoplasts’ out of non-irritating micropore tape and a bit of folded up paper tissue, onto which I slapped some Sudacrem and painstakingly covered each sore (all done immediately after bathing).
Crazy, I know, but effective!
May 6, 2016 at 7:20 pm in reply to: Strange non-healing (or slow healing) sores – NOTE: not for the squeamish! #5945BarbaraParticipantI have similar skin lesions mostly on my face with a few on my shoulders, and neck. . . . . . . . She prescribed low dose antibiotics and metro gel. I have been dealing with this for at least 6 months and have had little success in clearing them. I have recently changed my protocol with better results.
Which antibiotics ? and for how long do you have to take them ? Also, what is metro gel ?
BarbaraParticipantRegarding the paralysis. Years ago I realised, when I was laid down, my head was pushed upwards and sort of rotated frontally, if you get what I mean. I often woke up paralysed, with my chin on my chest. A position I was unable to put my head into before my accident. This topic from a while ago might be useful to you:-
April 6, 2016 at 7:27 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #5923BarbaraParticipantThis was one of the online study documents that I read, it was quite useful to help me identify some of the anatomy involved. There were diagrams to make it easier, showing you where to measure from and the terms used, etc:-
http://www.medscape.com/viewarticle/555355_3
Using their explanation of the Powers Ratio (which apparently was the one most commonly used at the time I had my accident) I checked my mid-sagittal MRI image and that method didn’t capture my injury.
BarbaraParticipantI know many of us are more sensitive to drugs than most, so are better starting on a low dose and ‘easing’ it in. I remember taking 62.5mg (a quarter of a tablet) of Diamox three times a day. I upped the night-time dose to 125mg, as it was during the night that I suffered the most head/neck/eyes ‘raised intracranial pressure’ symptoms. The reduced day-time dose still had a beneficial effect without such noticeable side effects.
I believe Diamox is very short acting, so I’m wondering if the daytime nausea is actually being caused by your raised intracranial pressure, i.e. once your morning dose has ‘worn off’. So, as I suggest, I’d try experimenting with a lesser dose (62.5mg) more frequent (3 times a day) and see if it brings improvement.
BarbaraParticipant– visual problems (eyes don’t seem to adjust back from bright lights or strong patters very well; things sometimes look like they’re moving when they’re not; I see flashes out of the corner of my eye during “flare ups”)
Just a thought if you’d just had a baby, did you limit your vitamin A whilst pregnant ? See
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