anna

Take care Pumpkin.

I had thought that but it seems that it may not be noted if you have a flat on your back type MRI these things seem to be better picked up vertical MRI plus many Dr.s do not believe for example a grade 1 herniation would cause issues.

oh and this one: http://www.upright-health.com/dysautonomia-multisystem-atrophy.html

Foggy01, Has anyone suggested your neck might be causing you problems?! I found the following it might be of use http://www.sassit.co.za/Journals/Physiology/Rheumatology%20EMRs/AIRWAY%20PROBLEMS.pdf http://www.upright-health.com/ehlers-danlos.html I hope someone comes up with something soon.

Yet another EDS/POTSie is taken away sooo sad.

Foggy 01, Sorry I can not remember are you a bendy (EDS or hypermobile) as well as POTSie?!

We love pink Himalayan crystal salt I find it does not hurt my tummy like other salt does, the kids suck on small crystals instead of boiled sweets, but not too many!

It does seem like a few of us here have issues with arrhythmia's other than just the tachycardia, myself and my children have many Ectopic heartbeats in runs, which make us quite breathless and they come on from nowhere. The thing that I find very frustrating is that we are constantly told lots of people have this it is harmless!! I for one am not totally sure about that given a family history of A-Fib, left ventricular dysfunction and Cardiomyopathy!

One of my son's had a random urine osmolality of 430 and high serum sodium at 147 urine sodium 300 so he was sent for a water deprivation test to rule out Diabetes insipidus. As the test was 'relatively normal' the paediatrician ruled out DI my son's POTs Dr. told him to keep up the sodium regardless! that was in 2008 But now this November just gone, our geneticist has explained he feels my other son's reduced mental agility may be down to another genetic condition that is linked to salt wasting, so we are very confused as to what is going on now, just wait for results to come back!

I have been called up for jury duty here in the UK a number of time's on our forms it has a section asking if you require any disability adjustments, I then just explain that I will require easy access to a toilet, rest breaks, and to be able to move about. I do not faint either but I do fall into a state of major incoherence if I stay still for more than 10-15 mins. I also have bladder/kidney issues as I can not retain fluid well. As yet I the courts have not been able to accommodate my needs!

Issie I just found this article http://www.eurekalert.org/pub_releases/2012-08/muhc-vbd082412.php

I wonder why POTS makes us all so sensitive to medication? Do you think it might be more a question of the thing that makes us POTSie also makes us sensitive to loads of other things?! Oh it is all so confusing lol

Thanks for this will have a good read later, when brain wakes up!

badhbt, The coloured lenses that my children wear are specialist opthalmic grade lenses, we went to a specialist optician that uses a special device to find the colour and contrast that helps the best. If you have a look on the internet you should be able to find a authorised Irlen Syndrome specialist. diamondcut It seems to be more plausible now as some new research has been done using brain scans: The aim of this study is to evaluate the data from a participant in a reading study who had a diagnosis of Meares–Irlen syndrome/visual stress (MISViS). MISViS is characterised by visual distortions and somatic issues, which are remediated using coloured filters. The authors present a case study providing descriptive neurobiological comparisons of MISViS versus a control group. The study involved eleven English language speakers who participated in behavioural and neuroimaging versions of a language experiment with varied proportions of regular and exception words. Behavioural measures included accuracy and response times. Neuroimaging was conducted using a 1.5T Siemens Sonata MRI. The MISViS participant’s data were removed from the overall experiment and analysed as a case study. Impulse response functions (IRFs) and percentage of active voxels were extracted from four regions of interest: BAs 17, 18, 19, and the postcentral gyrus (PG) and two control regions (BA6 and left BA45). The results indicated that significant differences existed between the control group and the MISViS participant for IRF intensity in two regions (BA6 and PG) and percentage of active voxels in four regions (BA17, BA19, PG, and BA6). No significant differences occurred in left BA45 for either variable of interest. No significant differences were found for behavioural measures. In conclusion, our findings offer one of the first neurobiological descriptions of differences in IRF intensity and percentage of active voxels in visual and somatosensory cortex during a language experiment for a participant with MISViS in the absence of migraine compared to controls. http://rd.springer.com/article/10.1007/s10548-011-0212-z So it does look like something is going on, plus there seems to be quite some excitement about the use of coloured lenses and reduction in migraine frequency. i hate bananas, It does seem like our eyes can be a problem due to the EDS as well, my children have issues with lax eye muscles as well.

I keep wondering if theres a way to adjust to it so i can get more involved on things and not feel so left out but I don't know if it's something that can be overcome or if it has to be pushed through? Not entirely sure this will be helpful: Scotopic sensitivity syndrome is based on the theory that some individuals have hypersensitive photoreceptors, visual pathways, and/or brain systems that react inappropriately to some wavelengths of light. Vision occurs when photons are detected by the retina, initiating a biochemical process affecting the visual pathways and deep structures of the brain. A growing number of researchers are taking an interest in the view that inappropriate biochemical processing has the potential to cause physiological and/or visual perceptual problems. Many of these problems are grouped together under the label "scotopic sensitivity syndrome". In simple terms, the theory is that some signals from the eye are not getting to the brain intact and/or on time. Although the eye might be functioning correctly, the brain receives what is like a double exposed picture where the location of items is confused. The brain tries to filter out the bad information and so the conscious mind receives a reconstructed image. That image may be of the items moving (the brain constantly changing its best guess of what is there), blurred outcomes (inability to form a view of what is there), gaps in wrong spots, and a variety of other minor errors. There may also be exhaustion (from the mental effort to unscramble) and sore eyes (from the eyes constantly seeking extra data to aid the process). The problem is worst where different colours do not all give a similar outcome. In nature you get a lot of consistent data but on a man made item (paper, for example) there might be only a limited colour set: the condition does not generate practical problems where there is lots of redundant data for the brain to use. The pragmatic response by Irlen was not to try to fix the problem but to avoid it. By filtering out the light most likely to generate problem signals to the brain, she was able to improve the likelihood that the brain will correctly distinguish between good and bad information. It also seems likely that in some individuals, over time the brain learns which colours are the problem items and improves its ability to reconstruct an accurate image. All 3 of my children find that coloured lens glasses help reduce some of their POTS issues they make a big difference to one of my boys, whom is very sensitive to his environment, I am not saying they work for everyone but it might be worth a try!

Oh this is such a horrible situation to be in, it is truly lovely that you are so caring for your mothers health and wellbeing, but as a mother myself with health issues and 3 children with ANS dysfunction and EDS a connective tissue disorder, I think you both need to be involved in each others wellbeing, try not to do all the worrying by yourself. You seem very well switched on for your years as many folk with such health matters tend to be, have you found any network of friends that you can chill with maybe more easy via the net have you looked at the NORD support community on Inspire . com. I live in the UK so the care system is so different to yours, are you able to get joint counselling I think you might both benefit from such an input, are you able to access an advocate should you need one. I have meet a number of young adults like yourself in my journeys on the net I am sure many would benefit from some sort of dedicated support group.

Emma I am not sure! I found this info in a nursing manual I am guessing this must be relatively well known in the cardiac field.

Yep highs of 210/110 but then sitting or supine it swings to lows of 90/60 and very oddly my highest BP's were when I was on a very low salt diet!!

Oh my the eye thing is of concern too as one of my boys has just been to the optician eyes were fine in February now he has very bad short sightedness in one eye!

All 3 of my children have had heart issues put down to POTS, that said my kids POTS DR. is sending my daughter for further cardiac and pulmonary work up as daughter keeps getting bad breathlessness that comes on from nowhere.

I found this article and think it may be of interest to some especially us EDSers: Left Ventricular Systolic Dysfunction Left ventricular systolic dysfunction is primarily a difficulty of the left ventricle to empty or eject the blood from its chamber. It is defined in terms of left ventricular ejection fraction (LVEF), which is a good clinical indicator of ventricular systolic function. Left ventricular systolic dysfunction is a progressive process, which begins with injury to the myocardium. In the body’s efforts to compensate for this wall injury, the left ventricle wall thickens from increased impairment of myocardial contractility. The ventricle then eventually hypertrophies and dilates. This process changes the normal left ventricle geometrical shape from oval to spherical, which in turn decreases the mechanical performance as well as increases blood flow back through the mitral valve (mitral valve regurgitation). This change in shape occurs in a process called remodeling. Ventricular remodeling is thought to proceed the development of heart failure symptoms by months to years. It is now believed that the body’s compensation to these cardiac abnormalities activates endogenous neurohormonal systems (e.g., angiotensin II, norepinephrine, aldosterone, endothelin, vasopressin, and cytokines), because heart failure patients have increased circulating and tissue levels of these neurohormones. Current disease management for heart failure centers on pharmacologic and non-pharmacologic treatments, which reduce or prevent cardiac remodelling.

The only thing I have been told is that it is because I am unfit!!! I hate it when the cardiologist takes one look at me (I am over weight) and says this is all because you are a little too heavy blah blah, I had this issue all my life I was thin until I had a rapid onset of weight in my early 40's. I think it might be linked to something like poor left ventricular function, as many of my family have gone on to have cardiomyopathy.

Myself and my 3 children have PVC's they come on anytime and render us breathless big time! My daughter constantly gets pvc's, and other odd disturbances show up on even the very short ECG's but the cardiologists just keep saying "your heart is structurally normal so this is fine" sorry but I do not buy into this any more I am sure there is a more legitimate reason for all this weird electrical activity. When you look around other EDS communities you can find many more EDSers with these sorts of problems.

That is brilliant news, their is a lot to be said for the alternative medicine approach to health and wellbeing.

Excellent one Jangle, brilliant news.