I just want to share with you a ‘Poor Mans Tilt Test’ that I took at home, way back in Feb 2013. I have included my heartrates just to show that I no longer suffer from pure POTS (i.e. my heartrate no longer raises by 30bpm upon standing). Instead my BP goes up, so I think my condition has morphed into Neurally Mediated HyPERtension (i.e. my BP continues to raise upon standing). Anyway, if you look at the readings below, it shows my BP associated to the symptoms I suffered, during the test.
Shortened version of the Tilt Test taken 27th Feb 2013.
As I have said I stand up many times a day (to make sure that I do not loose the ability) but do not stay up for long. I thought I’d have a go at a shortened version of the tilt table test. I skipped the lying down bit because I didn’t feel too clever to start with head uncomfortable (‘brain sore’) and I had to abort the first test, which brought on chest tightness upon standing (157/99).
Sat down, very unsteady, shaking (inside - not shivering), fingers purple.
After sitting for 5 minutes . . 158/97 HR 63 . . . . 80 = 117 - 37 headache
After sitting for 15 minutes . .150/97 HR 60 . . . . 80 = 115 - 35 still feeling rough
After sitting for 30 minutes . .137/90 HR 63 . . . . 80 = 106 - 26 feeling more normal but have a transient problem getting words out.
I don’t know - the things you do for science! My brain was still sore the next day, from temple to temple and over top of head!
I just wonder if our CSF pressure could change as fast as our blood pressure? It can swing wildly, after all… Thanks, Hon!
I was in the middle of a video diary, when I had an ‘episode’ where I went from feeling ok, to feeling bad, to feeling ok again. During that episode I took BP readings which showed that when I was feeling BAD my BP was up, when I started feeling ok again, within a few minutes, the BP was nearly back to normal, so in answer to your question above, my experience is that YES they go hand in hand.
Barb, Oh my, I see you experiment on yourself, too?! BTW, I started looking for non-invasive ways to check our CSF pressure (years ago), and although there are a few ways to do this, no one really does! I’m trying to get a radiologist to take an interest, and after they give me ‘that look’ (ha), some become interested, but not enough to actually help… I think the day is coming, however!
Yes, I’ve been using myself as a guinea pig too! It’s the only way to get to the truth. This condition is so complex that I think it would be impossible for a ‘non-sufferer’ to fathom, although many ‘non-sufferers’ have contributed to my knowledge, which I’ve built up over the last 10+ years. I believe you have to be in possession of ALL of the facts, to figure this one out. As soon as I became aware of your work, I had that ‘Eureka!’ moment. I knew you were on the right track and this forum holds a wealth of knowledge, provided by many wonderful people!
Well my method of calculating Intracranial Pressure is only a rough guide but it’s better than none and certainly far less dangerous than a lumbar puncture!
As I show above, my ‘Poor Mans Tilt Test’ results maybe indicate that I may have higher than normal intracranial pressure when trying to stand up for any length of time. I can also have an episode sitting down though (though these are fairly rare in comparison). I think it does indicate a frank Dysautonomia, where my autonomic nervous system is not regulating things appropriately. I certainly function much better sitting down, standing up brings on all kinds of problems, as you can see.
For POTS people there are other factors in play, for instance I heard that POTS people have LOWER CPP in a vertical position due to blood pooling, so if this is factored in, it makes the ICP even higher.
You know, Barb, I DO think that it takes a patient to figure this one out! Although I wouldn’t wish this condition on anyone, a medical professional who suffers would be the most likely to figure it out. And yes, optometrists count! ha
Absolutely, especially with your years of experience with dealing with eye matters, which seem involved in the condition and with your medical contacts, you are certainly best placed to make headway with the research.
I think if a study was done, it would be shown that many of us have intermittent bouts of raised intracranial pressure. Which would certainly explain many of the ‘intermittent’ symptoms, as cranial nerves become more compressed from time to time.
So, I suppose the question is, is there a physical cause for the intermittent raised Intracranial Pressure, i.e.
1) The low-lying or herniated hind brain that many of us seem to have, that’s bunging up the CSF outflow (depending on body position), or
2) Craniocervical Instability, where the back of the foramen magnum pushes the low-lying or herniated hind brain against the brainstem, interfering with CSF outflow (depending on head position). This is what I discovered was happening to me.
Each of these could hinder or stop the outflowing CSF from the skull to the spine and allow a build up of pressure.
There was a piece of research publicised in Brain Injury in 2010, which proved that some people who had suffered a head neck trauma (whiplash type injury) developed a more obvious ‘Chiari’ (herniated hind-brain) upon upright posture.
For those that don’t know, here’s some terminology:
Cerebellum - is the hindbrain
Cerebellar Tonsils - are the lowest parts of the hindbrain
Foramen Magnum - the hole at the bottom of the skull
Cerebellar Tonsillar Ectopia - herniation of the hindbrain through the hole at the bottom of the skull
Chiari 1 - is where the level of the herniation (below the foramen magnum) is 5mm or more
Chiari 0 - a term sometimes used for where the herniation is less than 5mm below the foramen magnum
Low Lying Cerebellar Tonsils - is another way of saying Chiari 0.
So anyway, about this study, they looked at 1200 MRI’s of people who complained of neckache. Half had suffered whiplash type events, half hadn’t. What they discovered in the research was that, of those that had suffered whiplash, herniation was more commonly found and that the scans taken standing upright were a lot more likely to capture it. See the study below for actual figures:
Fascinating, Barb! I need to take a closer look at this… The equation is correct (did you see it in my slide from the Global Expo that Dr. Francomano and I presented? When I spoke at Dr. Sclafani’s conference, I was addressing doctors, so I flew through it, assuming they would understand and follow me… Nope! A few came up afterwards and asked for help, and a neurologist from Italy asked for a copy of the lecture. A famous engineer grabbed me, as HE knew what I was talking about!! I’d like to fiddle with your discussion a bit.
The first time I stumbled across your work, it was a video for the International Society for Neurovascular disease, was that introduced by Dr Sclafani ? I can’t remember, I know I’ve watched the video you mention anyway. I have a vague recollection of it being a man who informed me of the equation but I could be wrong. I think engineers will grasp the equation concept easier because it’s basic physics.
Feel free to fiddle with it, it’s merely a suggestion, as obviously the CPP is dynamic too but as I say, it was better than nought.
Just thought I’d add a bit more knowledge to the original post, so I’ve updated one of my scans to include the Short Clivus point.
The pointed ‘tip’ of the clivus, is the front edge of that hole at the bottom of your skull (the Foramen Magnum). Normally the bone directly horizontally opposite this is what’s called the opisthion (the back edge of the hole at the bottom of your skull) and so all the brain and the skull contents are nicely enclosed above it, in a safe chamber.
Those who have a short clivus and a normal sized back of skull like me, have a problem in that, the part of the brain, which is normally protected by the clivus (the brainstem) is more exposed. The tip of the clivus is anatomically higher, making your odontoid anatomically higher and quite often the odontoid is directly horizontally opposite the opisthion (back of hole) like mine.
If the above is the case for you, whenever you look down (i.e. your head goes into flexion), if you do not have a good strong ligament connection, your odontoid can press towards your brainstem and can affect it’s functioning, worsening autonomic nervous system problems. Also this ‘pincer’ movement can put pressure on the cerebellar tonsils (possibly causing balance issues ?) but more importantly further blocking CSF flow between the head and the spine. This could build up pressure in the head making it more difficult for the heart to deliver oxygen to the brain - hence the tachycardia, lightheadedness and symptoms caused by raised demand on the heart, which could be palpitation, chest tightness and that sort of thing.
I think this is the principle behind many people who are having problems following a whiplash, or head and neck injury (like myself), as I’ve obviously had this skull anatomy all of my life but it’s only caused health issues since I had my accident (due to the ligament injuries).
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy); Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium) deficiencies, CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies; Myalgic Encephalomyelitis (M.E.) . . . . and now Growth Hormone Deficiency (due to flattened Pituitary Gland)!
I would just like to point out that there may be a ‘lack of pannus’ build-up against the back of my odontoid peg in my MRI scan shown above but, you have to remember that this scan was taken in 2010, after I had been wearing a Philadelphia collar & brace 24/7, for the previous 3 years (since 2007).
In Craniocervical Instability, ‘Pannus’ is a padding that builds up against the back of the the odontoid peg, as a natural defence by your body, to try and lessen damage to the brainstem.
Also, if you ever have another MRI please post the findings.
Well I was due to have one last month but I had an autonomic ‘do’ as soon as I laid down, affecting my breathing, followed by claustrophobia as soon as I got into the machine! Pants! It was only a 10 mins scan but I wasn’t able to take it (I was really cross with myself, as I was looking forwards to seeing the results).
I had claustrophobia for a year or so after my accident, way back in 2002, even small lifts were a no-no but then it went away. I’ve had lots of scans over the following years without any problem, so I don’t know why I had a problem this time (blooming hippocampus!)
What seriously annoys me about having acquired Cranio-Cervical Instability (CCI), is that people who have suffered a head and neck injury, or a whiplash injury are often not diagnosed with CCI. I wonder if CCI is even considered sufficiently at the time radiology is taken! Even though I developed a progressive neurological decline and persistently (and consistently) reported the symptoms, STILL I was not evaluated for this type of injury - incredible!
It was only when I personally took it upon myself, to find out what was going wrong in my body, some 5 YEARS after my accident that this possibility even arose, when I discovered a descrepency. I’m astounded at the lack of appropriate attention I received, both at the time of my accident and subsequently. I did a search on Google some years ago and, the results were astonishing, it was quite a high percentage of this type of injury that was missed. So if they know about it, why isn’t something being done about it!!
Consider the fact that many people with blatant hypermobility, when you think about it, are quite possibly suffering from CCI (even without having suffered a substantial injury to that area) as the head is only held on by ligaments, yet I bet they’ve never been assessed for it.
There are at least a dozen tests that have been developed over the years to supposedly test for this but, up to 2007, no particular test captured every possibility/type. The most popular is Powers but there’s also Dublin, Wholeys, Kauffmans, Lees, and several more that I’ve applied to my xrays and scans. I tried a whole boat-load of these against my xrays and scans and I passed most of the tests, which indicated I was ‘normal’, I only failed a couple. So two methods, out of all of the tests available, would have caught my CCI, if only the hospital had applied those methods, I wouldn’t have had to go through all of this hell and I probably wouldn’t be disabled today.
In 2008 I discovered the Bolognese/Milhorat method, mentioned on this website, this is a far superior method albeit more complex and requires mid sagittal MRI’s in neutral, flexion and extension - but if I can fathom it out, I’m sure trained radiologists can!
I think it is important that those who are blatantly hypermobile, who have neurological or dysautonomia symptoms, should be checked for CCI and if found, at least imobilised with a philadelphia collar until it can be resolved, in order to avoid more permanent disability.