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BarbaraParticipant
It was by being diagnosed with ‘Features of POTS’ way back in 2004, by Professor Christopher Mathias, at the Autonomic Referral Unit, St Mary’s Hospital, London W2 1NY, that set me down this long path of discovery, in the first place.
The EDS diagnosis came some 6 years later with Professor Grahame. Thank heaven for these people for without them we’d be lost. Let’s hope you get them on board Dr Diana, then maybe we can get some really affective treatment in this country!!!
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!BarbaraParticipantOh he’s such a lovely little darling, I do hope you can get on top of this for him. Is it purely the pain that stops him from standing, or is there circulatory involvement ?
Regards
Barbara
(UK)BarbaraParticipantI have various pains in my legs during the night. The treatment is dependant upon the cause really.
Part of mine is circulatory, so I have to sleep with my feet about 6″ lower than my bottom (I have a hospital type bed that I have permanently in a downwards tilt), so that gravity aids the circulation of blood to my feet. You can improvise by raising the head of the bed on blocks, or sleeping with pillows under her bottom.
The second problem is caused by my tissues being too fragile on my lower legs, they don’t withstand pressure very well. So, if I go to sleep (or wake up) with my ankles crossed, I am in pain, my legs also feel very sore at the point of pressure and it takes a while for the discomfort to dissipate. I have to be very mindful NOT to cross my ankles. At one point, even the weight of the covers caused the soreness but, thankfully, this no longer happens.
I have to wear smooth legwarmers 24/7 in order to keep my legs warm, as the cold can trigger pain too. If this is the case for your daughter, what about using an electric underblanket, on very low overnight, to try and maintain a more ambient temperature for her legs.
Pockets of fluid collect in my legs (confirmed once when they suspected a DVT), I’m not 100% sure but I think this is likely to be lactic acid. I have my lower legs massaged with Diprobase cream at least twice a week and this helps improve this condition, I suppose through lymph drainage and helps repair the dry skin there too. Maybe you could massage your childs legs before bed ?
Throughout the day, if I am sitting still for any period of time I repetitively curl up my feet, or lift up my heels, or rotate my feet, or jitter my legs, to help improve the circulation. You may have noticed your child fidgets a lot. It’s ok, we can do this when we are awake but in the night we don’t have this option and I think part of our condition is that our brains forget we have limbs, unless we move them!
I hope some of this helps.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!BarbaraParticipantI too have the dots, under my skin, they are not raised, like tiny bruises, mostly from my knees up, but only over my upper legs, as far as I know. They are red, sometimes purplish red and there’s loads of them, evenly dotted around, about the size of a dot from a ballpoint pen.
I didn’t know if they were caused by my support hose, which I wear 24/7 to help with the POTS. I have read that they can be a symptom of Vit C deficiency (interesting, as vitamin C is required to make collagen too, which us EDS’rs have problems with), so I have ‘upped’ my intake of vitamin C and they have subsided but not gone completely.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!BarbaraParticipantHi
Cabbage contains quercetin, an antioxidant that is a natural antihistamine that can benefit allergy sufferers, how do I know this? now here’s an ODD story:I had been to my GP a few weeks ago and been unsuccessful at obtaining any of the drugs suggested by Dr Diana. Over the past few weeks a very large weed rapidly appeared in the middle of my herb garden. When my daughter said “isn’t this a weed mum, shall I pull it out”, for some weird reason I said “no, don’t touch it, I don’t usually get weeds like that, let’s look it up” (er – this isn’t something I’d normally do for a plant!!)
I couldn’t believe what I found. Those of you well-versed with the intricate details of Dr Diana’s Theory, may end up as open-mouthed as I did. The weed was called a Sonchus Asper (or “sow thistle”). I looked on various nutrition and chemical journal websites and at a few studies – listen to this:
The Journal Of American Science says,
It has Alkaloids which are analgesic, anti-spasmodic and bacteriocidal; Flavonoids which are anti-oxidant, anti-inflammatory and iron-chelating; Proanthocyanidins beneficial for vision, also helping with diarrhea, intestinal parasites, hemorrhoids. It is rich in vitamins especially Vitamin C (we need Vitamin C to make collagen)The Chemistry Central Journal says, it has diuretic, refrigerant, sedative and antiseptic properties. Also that it contains Quercetin, now my further research on this shows Quercetin helps reduce the eye symptoms of hay fever and reduces Prostaglandin D2 production. It may be effective in the treatment of Fibromyalgia too because of it’s potential anti-inflammatory and mast cell inhibitory properties!
Other sources said it is a great source of Manganese (also needed to form collagen). It has anti-histamine, anti-microbial and anti-fungal properties. It’s used in Liver, Lung and Kidney ailments (hmm, maybe it’ll stop us “drinking like a fish and p**ing like a racehorse”?)
It used to be used as salad leaves in the Mediteranean area, it’s used as an Ethnomedicine in Pakistan and the Moari’s have a very low bowel cancer rate, due to including it in their diet, in fact several studies showed it’s anti-tumor properties. Blimey, it’s a superfood! So come on all of you drug companies, get your scientists onto this for us.
I was well spooked!! I have to say, it didn’t taste right good though! It has a bitter aftertaste. Hmm – I’ve just got to find a way of making it more edible!
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!BarbaraParticipantHi Barbara,
Thanks so much for taking the time to reply. I’m so overrun by disabilities (EDS for one) and it’s been so emotionally and psychologically traumatic (of course, not to mention physically) for me that I almost always feel as though I don’t know my head from my behind. Dreadful! I’m so needy and under-educated about the complexities and dumbfounding magnitude of my rapidly declining health that I would not have imagined that I could possibly have made a diff to anyone else.
Hey, we all make a difference to each other, we’re a family (LOL! could be in more ways than one!). We’re all travelling down the same path, some are in front of us and some are behind us but there’s one thing for sure, we’ve all felt that level of despair you reach when your health is rapidly declining and even those in the medical fraternity who do have the decency to listen, don’t have any answers. I’m hoping all that is about to change. So, in the meantime, I send you a BIG HUG, hang on in there.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!BarbaraParticipantI understand that it is possible to have both Marfans and EDS. This was explained to my by someone having ties to Hal Deitz, Clair Francomano, etc. I would deem the source from which I heard this to be reliable. I am unable to provide specific details unless I were to ask again and meticulously document what is told to me.
Hey thank you for the info on Hal Deitz. I am familiar with some of Claire Francomano’s excellent work but not this guy. I’m just checking out his video’s, seems encouraging, should it turn out that our relatives do have Marfan.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!BarbaraParticipantHello,
I can relate to many of your symptoms but my main observation, from your history, is that your symptoms were worsened after you gave birth. There’s one thing I remember about being a new mum (albeit 27 years ago!) and that is, that you spend an awful lot of time looking down i.e. with your head in ‘flexion’, feeding, cuddling, chatting to baby etc. Another activity that worsens your symptoms is reading, again you’ll be looking down.I bring this to your attention because my own symptoms were worsened when my head was in this position and, although I didn’t recognise it as anaphalaxis, my throat would swell, if I looked down at a magazine and turned left, right, left, etc., as you do when glancing through the pages.
One occasion when this happened I was actually in the hospital waiting room, waiting for my ENT appointment. The episode lasted approx 30-40 mins and had unfortunately subsided by the time I saw the consultant. However, when she checked my throat, she said it was red but blamed it on ‘Gastric reflux (even though I hadn’t had a reflux attack!!) and told me to continue with the GR medicine (crazy!).
Also, when I woke in the night with the pains from HELL, sort of paralysed, able to only move one tiny muscle at a time (which worsened the pain!) until I’d got use of my body back – I noticed that again my chin was right down on my chest (head fully in flexion).
You need to bear this in mind and try and adapt the things that you do, so that your head is straight forwards as much as possible, observe and adjust, I’m pretty certain it will help.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!BarbaraParticipantHi Maffin,
Your post had me nodding (oops shouldn’t do that) and laughing! You have a very clear insight into what fatigue is actually like, when it affects you at ‘mitochondrial level’. So many of us have been there – and you are SOOoo right, other people just don’t get it because we look normal (almost!) on the outside. Thanks for the drug info too.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!BarbaraParticipantWatched Dr. Terry Wahls’ TedX talk “Mind Your Mitochondria”?
Wow! Thanks SweetFeather, this in particular was very educational and parts of it can help other people I know too, suffering with different disorders.
Regards
Barbara
(UK)
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!BarbaraParticipantHello,
I’m new to the forum but not new to the condition (EDS, POTS, CCI, etc), which I have suffered the consequences of for the last almost 10 years, since I had a head an neck injury.Having worn a collar since 2007 and tried several en-route to finding the best. This is my analysis, based on my experience:
2/10 Basic Soft collar – doesn’t cradle the head sufficiently to aid correct CSF flow.
4/10 Aspen collar – unfortunately doesn’t support the natural curve of the neck enough.
6/10 Johnson CTO (Metal Jacket)- excellent support for head but not neck which soon aches.
9/10 Philadelphia Collar – Excellent support for head and natural curve of the neck. It
maintains the head and neck in good relation to each other, aiding CSF passage
through the cranio-cervical junction (between head and neck). I had a gross
reduction of my symptoms from the first day I wore mine, some immediate, some
eventual. Point of note: You do need to wear collar linings with this one!!Hope this helps, as it might not be the right type of collar that you are using, that’s all,
Regards
Barbara (UK)Hi
Forgot to mention, I also have something called a ‘Headmaster’ collar, which is a lightweight, open-frame of a collar, made of fabric coated tubular metal (steel?) which, although it doesn’t cradle the head (other than at the chin) it does support the head somewhat and is better than no collar at all. I wear it for short periods, when my Philadelphia collar gets overbearingly warm, as it lets the air get at my skin (ideal for this hot summer weather we’re having in the UK) but I only wear it when I’m sitting still. It wouldn’t be any good for my CCI condition, if I was doing something more active and it certainly isn’t good enough to support me overnight.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!BarbaraParticipantDoes anyone know if a child of a EDS type 3 could have Marfan’s, or would it be more likely the child “just” has a Marfan’s appearance and is also a type 3?
It has recently become obvious to me that my 17 y.o. son is looking more and more like he has Marfan’s (and none of my other children have this look, even though several have the signs/symptoms of EDS). He is 6’2 and his arm span is 6’4.5. He is very thin with a short torso and long legs, arms, feet and fingers. His chest has that caved in sternum look and his ribs poke out quite a bit. He is hyperflexible, has the widening scars and slow/poor wound healing. He has had one finger dislocation. Blue sclera. The list goes on and on. But the main difference between he and my other EDS kids is the arm span being longer than his height.
Is it typical that the only way they DX Marfan’s if there is no family history of it, to do an ECHO and if they find a problem then it is Marfan’s and if they don’t find a problem then it isn’t Marfan’s?
Thanks for any info you all can share with me!
Hi,
I am curious about this too, I am EDS lll, only 5’3″ tall(now!) with short body, long arms and long legs, my girls are a little taller but more or less how I was at their age (average build) and both have signs of hypermobility. My son however is 6’3″, tall and thin with long arms and legs and has a few problems that made me wonder whether he was Marfan or not.
Regards
Barbara
(UK)BarbaraParticipantHi Diana,
I can send you copies of the set of discs, no problem (although be warned – I do seem to have accumulated quite a few!) . . . just let me know when.When can we expect your next info release?
Can’t wait to see which Neuro you’re gonna get on board . . . (think I might know already!)
Keep up the good work,
Barbara
(uk)Hi Barb, yes, the discs are soooo time consuming. I’ll pull together some “sample images” I need and maybe ask a volunteer to help me pull these images off of the discs, if you don’t know how. Sound good? Everything is waiting on this publication. The neuro is amazing, and an expert in hydrocephalus and venous stenosis. He is actually closer to your area than mine! Excited? I am! :)Thanks for your patience. Big hug…
Hi Dr Diana,
Yes I’ve no problem identifying the anatomical areas. I seem to know more about the brain and spine, than I do about anything else these day! LOL!!
Regards
Barbara
(UK)BarbaraParticipantHi
I too can get double vision in one eye. It’s not there all of the time, it comes and goes. I can see two sets of facial features for example, one set directly above the other.
Regards
Barbara
(UK)May 27, 2012 at 8:38 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2231BarbaraParticipantHi
You say your voice is higher in your collar, I’m just a little concerned that your collar could be too tight fitting on your throat, not good. I had to have mine cut away a little from that area in order to be comfortable.Whilst we’re on the subject of collars, for anyone that’s recently bought one, a Philadelphia collar is best worn with a collar lining, at all times, in order to avoid overheating and discomfort. They have to be cleaned daily too, to stop further skin soreness and irritation. I think they’re called ‘cool max’ liners.
Regards
Barbara
(UK)I’d have to say this is likely the biggest complaint of EDS/POTS based on the number of posts & views! This & fatigue are a close tie for me.
I’ve struggled with this for years. I began complaining to my doctor about this & daily headaches in 2000. I was told they were tension headaches and sent to a chiro. It didn’t help. Fast forward through a sports-related neck strain and 3 whiplashes (my car is certainly a target for bad drivers), and 2 falls (over a dog gate & down a flight of stairs) and it’s still here. I’ve tried PT, more chiro care, OTC meds, ergonomic workstation adjustments at work, acupuncture, steroid injections, & massage. NOTHING touches it. Except for my c-collar! Best $10 I’ve ever spent- haha.
Results? I have a little more energy today. Could it be the coffee with an extra shot of espresso? Maybe :). I think my vision is a TINY bit less blurry today. Well, it was when I woke up anyway. Hmmm… the neck pain is back and so is the blurry vision. Related? Heck yes!
Also, I think my voice is higher pitched when I’m in the collar. Anyone else? Why would that be?
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