January 4, 2013 at 12:29 pm #383
Could do with picking your brains please:
I’v always gotten headaches quite allot since i can remember and it feels like it comes from my eyes and back of my head. There sensitive to light, even on a gloomy day, and my friends and family always tell me my eyes are massively dilated allot of the time. My eyes feel like they shake side to side really fast, when i look at an object i often have to blink or close my eyes for a while before i can look at it without it shaking, especially when I’m tired. If i look at anything with close together stripes or pin strips like black and white i get an instant headache as my eyes don’t seem to cope with distinguishing the colours and pattern. Also when i read black writing on white paper it looks as though someone is shinning a light through it so i can’t see the whole word.
Im EDS type 3.
ThanksJanuary 4, 2013 at 4:34 pm #3295
Well i had very similar symptoms and had a load of tests by a ENT specialist and then a headache expert. I was diagnosd with migraines vertigo, however after visiting here i think its more like Hydocephalus!! Have you been to a an ENT Dr yet?January 5, 2013 at 5:46 am #3299
Hi, No haven’t been to see an ENT doctor yet because i live in the UK our GP’s have to refer us to specialists but my GP doesn’t no anything about EDS and isn’t really willing to research. I get migraines too usually set off by flashing/flickering lights, but this doesn’t feel anything to do with that at all. Thanks for the reply 🙂January 5, 2013 at 11:23 am #3301
I live in the UK too, but i am lucky that i have a GP who is understanding. The best thing to do is take print off’s about EDS and the issues you want to bring to your Dr’s attention. If you GP is unwilling to listen i think you need to change your Dr. I have seen Dr’s privately in the UK and on the NHS,so waiting to see a consultant can be a long time. The person you should ask to be refered to is a Prof Rodney Grahame, he is the UK expert in EDS (there really are not many) If you can see him he will hopefully be able to help in some way. It sounds like you need to be refered to a nuerologist or ENT in too in my opinion. With having EDS its very common to have headaches of many kinds. I know a name of a Nuerologist who has experience with EDS patients if you want to PM me.January 8, 2013 at 2:50 pm #3308
Apologies for the delayed reply.
Does Prof Grahame work at UCLH? Iv just been referred there for physio and orthotics so could maybe get a referral to him too. A name of a neurologist would be brilliant please.January 10, 2013 at 4:53 pm #3315
I think he does Laura, I know its central London anyway. Sorry i myself have not seen him, as i have seen more of the POTs and Nuerology side of things.It sounds like if you are being refered there you are going to the right area atleast, but Grahame is the man for EDS in the UKJanuary 12, 2013 at 9:51 pm #3319
I’m from Yorkshire, UK but I travelled down to London, on several occasions for assessments. After months of research back in 2004, I figured out that I might have POTS, as my history and symptoms seemed very similar to others on the Dinet.org website. So I arranged to see Professor Christopher Mathias and his team, at the national referral Autonomic Unit, in London. My GP made the referral, even though I paid for it privately. I stayed at the Queens Square Neurological hospital for 5 days of testing and Prof Mathias diagnosed ‘Features of POTS’ (an autonomic dysfunction).
Then after much more study (particularly of xrays and MRI’s) I came to realise that I seemed to have signs of head instability so, after I managed to get an NHS referral to the local spinal injuries unit, they put me in a ‘collar and brace’ orthotic device 24/7. After 3 months or so, they tried to wean me off the collar and brace, which I was greatly looking forwards to, as I felt a bit of a burk in it! Although I seemed ok with normal slow and controlled movement, as soon as any ‘pressure’ was put on, to rotate, flex or extend my head (e.g. assisted isometric exercises) the symptoms started up again, so I was back in the orthotic device indefinitely.
In the meantime I also spotted signs, symptoms and features of Chiari (even though I hadn’t had problems in the 48 years before my fall!). So in 2008, I went to The Chiari Institute in New York where I also spent a few days having scans, assessments and procedures. They spotted my Cranio-cervical Instability, along with several chiari related issues, that were compounding the problem and said I needed immediate surgery to fix my head to my neck – but of course I couldn’t afford to have it done in the USA. All these things had been missed here in UK! There are so called ‘Chiari specialists’ here in the UK but I can’t say I’ve had any positive dealings with them. Has anyone else, I would be interested to hear ?
I couldn’t understand why my head was ‘still loose’ 8 years after my accident, as I’d always been a ‘quick healer’ in the past, was there something underlying, stopping me from healing properly? I found that EDS could affect this, then I remembered my mums bendy thumbs! – did she have it? Had I inherited it ? So my GP referred me to UCLH (I think it was Euston Road?) to see Professor Rodney Grahame in 2010 where I was assessed by him and another specialist, and given my EDS III diagnosis (got that on the NHS yey!).
You see, there’s no strong boney junction where your head meets your neck, it’s all held on by ligaments so, if you have EDS/Hypermobility with it’s poor collagen production, many symptoms can manifest because of abnormal movement in this area.
The problem you have with your eyes darting Laura, I’m wondering if instability has something to do with it because I’ve come across this many times before both in my research and on the forums, particularly from those with an underlying chiari type anatomy. Have you ever had a head or neck injury ?
Finally I needed to address the pain behind my eyes, so I asked my GP to refer me to a Neuro-Opthalmologist, luckily there’s a good one nearby in Leeds, called Ian Simmons. He spotted a problem and I managed to get on Diamox, which reduces the intercranial pressure and has been successful at reducing this pain.
Sorry for the ramble! Though some of it may help
(UK)January 13, 2013 at 3:00 pm #3327
I wonder if you could help me with a few questions here please
I was also dx by a Prof Aziz in London who then moved me onto Prof Mathias and i was lucky, i only had 3 days of Autonomic testing, but it was not the easiest few days of my life, and i had a very serious mast cell reaction to the stress test i had to do which took me weeks to get over, that on top of TTT!!Not an easy time at all but gave me some answers that took years to find!
I suffer with chronic daily headaches, with all the symptoms of neck and shoulder pain and Hydrocephalus. Diamox has helped grately so i know there is an element of pressure going on. I have POTS/EDS after ruling out CFS leaks with an mri, they did notice some disc compression although mild and Epidural lipomatosis. But again they said this was “normal”. After reading up on Epidural lipomatosis it doesnt appear to be normal at all to have as a 29 year old female, anyway they dx me with Migraines vertigo, but i feel there is more to the picture.
Can i ask what should show up on an MRI if you suffer from head intability? I have been sleeping upright with a soft collar and the help it has brought is huge, i am wondering if i too could be suffering with this? Neck movements, be it up or down or left to right can make me so nausea that i loose strength in my whole body, my headaches always start with terible pain in my shoulders and neck. As the day progresses the pain gets worse, always.
What worries me is that although my old nuero from the national nuerology hospital said there was no chiari, he actually sat infront of me when he checked over my images as they had been sent across that day, and he spent 2 minutes looking over them.Is this satisfactory? Also i have read to be sure of a chiari malformation you should be in a upright mri. Do you know how true this is?
I suppose the best way to see if you think you could be suffering from cranial instability would be to wear a rigid collar. Would a neuro even know what to look for if i bring this up at my next appointment?
Many thanksJanuary 15, 2013 at 11:57 pm #3351
I have to say that I felt quite good after 5 days of bedrest, when I undertook the autonomic testing in 2004!
Yes, the head instability is a good question, as there are at least a dozen tests that have been developed over the years to supposedly test for this, 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 – but I can’t think of their names at the moment!) The most popular, that has been adopted I believe is Powers.
Anyway, as I say, 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. Unfortunately for me, the hospitals that had looked at my x-rays etc, had not used the test that trapped my Craniocervical Instability (CCI). At that time, no test had so far been developed that could ‘trap’ every possibilty of this type of injury.
However, in Dec 2007, a paper was released by Drs Milhorat, Bolognese, Nishikawa, Francomani etc that made a real good attempt at ‘covering all possibilities’ of this type of injury (Dr Diana has a link to this paper, on her handouts page, I believe). You do need to compare laying down with standing up MRI’s though, if I remember rightly – it’s a few years since I looked at it! It seems more than a little complex at first BUT after some study, I grasped it and applied it to my xrays and scans and HEY PRESTO the mystery was revealed – blatant craniocervical instability!
You don’t need to have full blown Chiari to be suffering symptoms. It’s unfortunate that most neuro’s only look for full blown Chiari. They never contemplate the effect that ‘low lying cerebellar tonsils’ (or cerebellar ectopia as it’s sometimes called) will have, if you also have an underlying retroflexed odontoid (that the peg like bone in your neck, C2, that points backwards in some of us) combined with craniocervical instability – if you have this, every time you bend your head down (in flexion) you are poking your brainstem from the front and crushing your hind brain from the back!!
This is one way that wearing a rigid collar helps, it stops you putting your head into flexion!
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). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!January 17, 2013 at 9:47 pm #3356
Thank you for your detailed reply.
You certainly do sound a pretty switched on person to be able to look at your own x-rays and scans and try to make some sense of it all when Drs here cant always help past a certain point.Not an easy task!!!
It is complicated stuff, but i have been reading up on CCI,and more so on Chiari now that i am bot so sure it has been “ruled out” totally correctly. I had a look a my MRI scans from last year and they were correct in that it isnt full blown chiari (or a 5mm drop) but to me it does look like mild herniation, although i am not an expert, from other images on the internet of people who suffer with milder disformations of Chiari mine doesnt look too dissimilar.
The main biggy for me though is the difference sleeping upright, and with a collar on. My rigid collar still hasnt arrived but i found one of those pump up ones in the cupboard and gave it a go lol. You can actually adjust the height it stretches your neck quite well but the only thing is becuase its sort of plasticy it can make you hot and sticky which is bit uncomfotable. I have worn it two nights like that now and with the diamox of course and i have managed no headaches for two days. This is unbelievable for me, slight neck ache when being in the car but it did go. SO the next test is to wear in the day and see what happens then. I suspect there is some sort of compression going on and thank you for pointing CCI out to me as this is a direction i wouldnt have thought of as i pressumed from Drs nothing on my MRI or CTS had any impact.
Can i ask please, when you talk about putting the neck into flexion, when i look down it causes huges problems for me in so many ways, but if i actually have my head to the extreme so that my chin is in my chect if you know what i mean, if i was like that any longer than a minute i would always trigger one of those awful “migraines” with in seconds. Surely chronic migraine can not be triggered by having your head down like that, i would think that would be a major indicator of something cranial too? I get a dull pain in the back of my neck and lower head when looking down or extreme left to right, and the very painful stabbing pressure behind my eyes and forehead with nausea is immense. Does this sound like classic CCI. Is therer a name for when you describe our peg like bones in the c2 area being the wrong way? I couldnt find it. Is this another EDS common thing.
But thanks again, i am going to continue reading and experimenting with the cervical rigid collar as soon as it arrives. Sorry for all the questions, its just this could be quite relevant for me i feel
NinaJanuary 18, 2013 at 11:39 pm #3362
NHS Neurologists here did nothing at all (and I saw several!) except take down my history and look at me blankly, one BUPA neuro offered me Amytriptyline (to make me so woolly headed that I’d stop complaining!) – but I declined and I’m glad I did because it’s not recommended for POTS.
I had no option but to take matters into my own hands, it felt like I was slowly slipping off this mortal coil, to me it was a race against time. Before my accident I was a freelance Systems Analyst, so I simply took the approach that I would for any other contract won.
I had to educate myself with the ‘tools of the trade’, which in this particular case were anatomy, radiology, neurology, biomechanics and some systems biology – thank heavens for the internet! I bought stacks of text books, a working model of the skull and vertebrae and a CD from a trainee doctor on how to read MRI’s! It was a major task, it wasn’t easy by any means.
I obtained copies of all of my medical records, x-ray and scans. I sought anyone with knowledge who would interact with me by email, I was surprised who stepped forwards. So, with ‘necessity being the mother of invention’ and all that, I grew more and more familiar with anatomical terms/landmarks and with was normal and what was not.
I took a table with a glass top and made a make-shift ‘lightbox’ for viewing and photographing my x-rays, so I could load them up onto computer. I also pegged all of my x-rays and scans on a line that I fixed up in front of my patio door, so I could look at them ‘in series’ rather than individually.
I found loads of things they’d missed – fractured base of skull, 2 fractured vertebrae, damaged/thickened transverse ligament, swollen tissue, possible fractured condyle, a progressing empty sella, a seemingly twisted brainstem, an abundance of fluid in my brain, Chiari 0 (low-lying cerebellar tonsils) but most important of all – Cranio-cervical Instability.
Now I’ve spoken with many people who have chiari 0 (which isn’t acknowledged by many in the medical fraternity) but these these people are really symptomatic and not getting any help. They are not solitary cases. I couldn’t believe why so many of us were being fobbed off, or treated as psychiatric cases, so I decided to look at ‘the state of neurologists’ in the UK. I couldn’t believe what I was reading, that there was a great shortfall of neurologists so the powers that be had recruited doctors who were trained/had been practising in psychiatry! What chance had we got?!!
I’ve had to sleep upright for 10 years now and this and my philadelphia collar have been my saviours. A word of advice about the Philadelphia collar, you need to get several linings with it (they’re called coolmax) and change them, plus wash the collar every day, otherwise you overheat and sweat and develop sores – you know how easily our skin breaks down. You have to put up with a little overheating and restriction I’m afraid but the benefits truely outweigh the downside.
You need to avoid stretching your neck with a collar as, if you have craniocervical instability, this results in a stretched brainstem – which is NOT good believe me. You need a collar that fits you comfortably, you’re more likely to keep it on that way.
Your head in flexion, particularly if you can touch your chest with your chin, is a SERIOUS NO NO! It has to be avoided at all costs. No wonder it accelerates your symptoms, this is when the brainstem is pinched the tightest and it can cause neurogenic shock, so don’t allow it happen. I cannot stress this point strongly enough.
If I can suggest an explanation for the sudden migraines, when your head is in this chin to chest position, remember that the area which is being compressed is also the passageway where the cerebrospinal fluid circulates between your head and your spine. In your case, this space is already seriously crowded with brainstem and hind-brain tissue so, if you compress this area, the fluid is displaced, the flow stops and the pressure will build up inside your head.
This can cause head pain, possible eye pain, dizziness and I believe it could induce or worsen tinnitus, you might begin to hear blood wooshing in your head as your circulatory system starts to struggle against the raised pressure. The subtle brain compression could cause nausea, tingling, numbness and eventual paralysis, if not corrected. I know because I experienced this many many times.
Sorry for the small novel!
P.S. The C2 peg-like bone, if it bends backwards is called a ‘retroflexed odontoid’.January 20, 2013 at 12:30 pm #3364
Not at all,
I appreciate the time you are giving explaining this.
The more i have read up on this at the weekend, the more i think this is whats going on with me. Especially now you have mentioned Chiari 0. I was surprised when they said i didnt have any signs of it because i had so many features, the whole reason they sent me to an ENT Dr before a nuero was because head and eye movement was the first and most prominant part to my problmes. I was house bound at that point as just couldnt move my eyes and head around!!They gave me some vestibular exercises which even my nuero said not to do, thank goodness, they would have made things worse with CCI! Obviuosly if they cant find inner ear trouble, obviOUs Chiair, it goes on to migraine. Theres you answer be happy with it!
Thats incredible about how Nueros were recruited from PSychiatrists here, quite funny as Amitriptyline was the very first drug they put me on around 6 years ago when they couldt find a thing wrong with me (missing the pots and eds totally) I am still on it to this day but have got it down to 10mg a day so it doesnt interfer with the pots. I dont really know if it helps any of my pain conditions anymore, i am a bit scared to totally come off it incase it was doing something.
I can imagine some of the reactions that you got from Drs just asking for your scans to study…… What was there reation when you told them all the thnigs they had spotted?
My collar should be here this week so i am very keen to see the out come!!
Thank you again for the explinantions of what could possibly be happening with me.
Kind regardJanuary 20, 2013 at 9:10 pm #3366
Some of my problem was caused by ‘Peripheral Vestibula Dysfunction’, for which they gave me some ‘Cawthorne Cooksey’ excercises. I persevered with what I could do but it didn’t get rid of the problem altogether as I still loose my balance, when I do stand up.
I never asked the dr’s for my scans and x-rays, I approached the medical records department of each hospital involved and asked for them. In this country (UK) everyone is entitled to a copy of their own records (at a fee of course) I think I paid £50 per hospital/GP but, due to many fruitless and uneccessary appointments, I had acquired a lot of records!
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