anna

Yep Issie that is the angle I was looking in to after reading this article http://www.labspaces.net/122944/Vitamin_B___deficiency__Tracking_the_genetic_causes I do understand that this does not hold the answer to every one it just got me thinking.

Issie that sounds promising. Do you think that may be possible that mast cell issues in the gut reduce the bodies ability to absorb certain vitamins like some one with crohns.

Wow Sue thank you for that link, I will be passing it on to our consultant. I believe my mothers GP thinks my mum has some sort of inherent problem going on and has put my mum on b12 injections 1 every other day for 2 weeks then 1 shot every 3 months or sooner for the rest of her life. My mum has suffered sudden onset of psychosis, paranoia, depression, to the point that we had started to look for care homes for her as she has gone down hill so badly, but her GP is sure this will clear to a more manageable level when my mums B12 levels are up as GP said they were very low but she does not have the anaemia at this point. Issie Do you think the Gastro Crom might be suppressing some autoimmune thing doing on in your guts so now you are able to properly synthesis all your vitamins?!

Vitamin B12 deficiency can lead to serious neurologic complications including peripheral neuropathy, bilateral cerebral dysfunction, optic neuropathy, memory loss, personality changes, impaired recall, and subacute combined degeneration of the spinal cord.1,2 Subacute combined degeneration is a rapidly progressive myelopathy that can be associated with profound neurologic deficits including progressive sensory abnormalities, ascending paresthesias, weakness, ataxia, loss of sphincter control, and gait impairment.1–7 In some patients with vitamin B12 deficiency, subacute combined degeneration can be triggered by brief exposure to nitrous oxide during anesthesia8–10 and in others after prolonged recreational use of the drug.11 Pathologically, the disease is characterized by astrogliosis, normal oligodendroglia, and normal neurons.12 Subacute combined degeneration used to be a common devastating disease but the elucidation of its etiology has led to therapeutic and prophylactic use of B12, which likely has decreased its prevalence.13–15 <p> Symptoms of vitamin B12 deficiency can affect the gastrointestinal tract, the nervous system, and the cardiovascular system. Symptoms of vitamin B12 deficiency include: Chest pain or heart palpitations Confusion, memory loss, or dementia Constipation Depression Developmental delays and failure to thrive Dizziness, trouble maintaining balance, and fainting Fatigue or weakness Numbness or coldness of hands and feet Pale skin or jaundice (yellowing of skin and eyes) Poor appetite Shortness of breath Sore mouth and tongue Weight loss I am sure this must have been bought up before but I could not find any links in the search, so I will ask you guys; have any of you guys been tested for this? I ask because my mum was just diagnosed with this and it has got me thinking if this is infact what is causing my children's symptoms.

I have a good idea how you feel as I get constant aura type symptoms but with the visual stuff as well, the only thing that has ever helped reduce it is:- "Amlodipine is a calcium channel blocker. It relaxes the arterial wall and makes it easier for blood to pass through blood vessels. The drug can be used to treat hypertension, coronary artery disease, angina pectoris (Prinzmetal’s angina and chronic stable angina pectoris), heart failure (including decompensated heart failure). It can be used as a monotherapy or in combination with other medicines." It has also reduced my Raynaud’s and Angina type symptoms, but I do have high BP ANS dysfunction with big swings to low BP when sitting, with and without BP meds.

That is brilliant news, keep up the good work.

I would tend to go more for the hypermobility has something to do with it theory, I am sure that folk without any connective tissue issues may well have other reasons for their migraine, but for us it seems so many of as have some very odd things going on with out blood vessels too much so to be just coincidental. Oh my 3 children tried Midrodine very low dose but quite noticeable odd reactions, 2 of my kids had an increase in temp control problems feeling like they were burning up big time my daughter felt a huge pressure in her head but her BP was low as normal even supine. Other lad managed to up his dose till he could not deal with side effects but still his BP and HR did not change! It is so difficult to get Dr. looking at the whole picture with us!

I think you might find this link useful: http://www.reuters.com/article/2011/03/02/us-extreme-flexibility-migraines-idUSTRE7216SF20110302

I found a very good piece of research done in the Netherlands about EDS, which may explain why so many people with EDS find it very difficult to reduce POTS symptoms. Ehlers-Danlos syndrome (EDS) and Marfan syndrome are two of the most frequent inherited connective tissue disorders, characterized by joint hypermobility, tissue fragility and easy bruising, skin hyperextensibility, and / or arterial aneurysmata with ruptures. Neuromuscular features have been reported in incidental cases, and are generally ascribed to reduced physical activity. Inspired by patients referred to us and by recent developments in neuromuscular research, we presented an overview of the clinical and molecular continuum of the inherited connective tissue disorders and certain myopathies. Next, we studied the occurrence and nature of neuromuscular features in EDS and Marfan syndrome, and showed that both disorders are associated with mild neuromuscular features, with signs of myopathy and polyneuropathy in EDS; and signs of myopathy, polyneuropathy, and lumbosacral radiculopathy in Marfan syndrome. Furthermore, we showed that severe fatigue and chronic pain are highly prevalent among EDS patients. The five possible determinants involved in fatigue in EDS are sleep disturbances, concentration problems, social functioning, self efficacy concerning fatigue, and pain severity. Pain is related to hypermobility, dislocations, and previous surgery and associated with moderate to severe impairment in daily functioning. Finally, we investigated the pathophysiological mechanisms of muscle weakness in EDS in order to explore the role of the extracellular matrix in muscle function. The results showed that muscle weakness in EDS is not caused by reduced physical activity but results from (1) alterations of the series elastic component of the myotendinous pathways (due to increased compliance of connective tissue of muscle and tendon); (2) a reduction of myofascial force transmission (due to increased compliance of connective tissue between muscles and fascia), due to which muscles act more independently; and (3) a failure to maximally voluntarily activate the muscles. This study will probably increase awareness of the various neuromuscular features of these and other inherited connective tissue disorders among clinicians and researchers, and thus improve the clinical recognition of these symptoms. The results of the studies on fatigue and pain could form a starting point for the development of an effective cognitive behavioral intervention for fatigue in EDS. Treatment of pain should be a prominent aspect of the symptomatic management of EDS. The results have also raised new research questions, e.g. what is the occurrence of neuromuscular symptoms in other inherited connective tissue disorders; which pathophysiological mechanisms cause peripheral nerve dysfunction in EDS and Marfan syndrome; how do ECM defects in various types of EDS result in intracellular - both myopathic and axonal – changes; and why is central activation capacity reduced in EDS. The rest of the research can be found: http://dare.ubn.kun.nl/bitstream/2066/91217/1/91217.pdf

Funny really that most of the folk in my family that have/had EDS and ANS dysfunction of some form also have or had cardiomyopathy by their early 50's all of them worked manual jobs fishermen, painting and decorating, the latest one with this is by brother who drives underground trains, well not any more due to his heart. The thing that is odd is that the family members that did less full on manual work did not get symptoms of cardiomyopathy as young as the ones that did more demanding jobs.

I am always happy to hear folk have been able shake off this condition one way or an other it gives every one hope, but I do get a tad concerned when I read how POTs is simply an issue of de conditioning and if we all got up and really push yourself you will be cured! This may actually be correct in some cases, but I see from this forum and a number of others that their is much more to it than not pushing ones self. It would be so sad if all the folk ill with POTS and a like, end up being marginalised by society as lazy good for nothings. Then founding for research into all this gets moved else where when a real cure or understanding of this condition could be just around the corner. I want to hope that my children's children may be able to live a life without this condition blighting their life.

Oh Anoj I am sure it is the insurance companies that finance this kind of 'research/report'.!

Yes Batik you are absolutely right looks like POTS is going the same way as CFS/ME.

"Lack of exercise as a medical condition" Not too long ago the world health organisation decided to employ the 'Biopsyscosocial' model of medicine, thus we get this sort of scientific logic! Citation Database: PsycARTICLES [ Journal Article ] Correlates of Functional Disability in Patients With Postural Tachycardia Syndrome: Preliminary Cross-Sectional Findings. Benrud-Larson, Lisa M.; Sandroni, Paola; Haythornthwaite, Jennifer A.; Rummans, Teresa A.; Low, Phillip A. Health Psychology, Vol 22(6), Nov 2003, 643-648. doi: 10.1037/0278-6133.22.6.643 AbstractThe study investigated correlates of functional disability in 94 patients (89.4% women, 10.6% men; mean age=34.2 years) with postural tachycardia syndrome (POTS), a clinical syndrome of orthostatic intolerance characterized by significant functional limitations. Path analysis supported a model in which, controlling for demographic and disease variables, catastrophic cognitions were directly related to the latent variable functional disability, whereas somatic vigilance, anxiety sensitivity, and neuroticism were indirectly associated with functional disability through their relationship with catastrophic cognitions. Results suggest that modifiable psychological factors play a role in the functional limitations experienced by patients with POTS. Longitudinal research is necessary to confirm these relationships. (PsycINFO Database Record © 2012 APA, all rights reserved) Now sorry but I really really do not agree with this view.

Well done, keep up the good work.

Oh my it is amazing what you can find on the net! Ok how many of you have sleep apnea?! http://www.medicalnewstoday.com/releases/13671.php

It seems that many folk out there on the net have such issues I found this study interesting; http://www.francescobiondo.it/approfondimenti/MRGE/Area%20Medici/Cardiopatia%20aritmica.pdf

Wow that must have felt horrid, ok no heart related issues but Asthma. Katybug do you get acid reflux? is it worse when your POTS is worse? Sorry for all the questions!

I have been wondering of late if there may be a link with Hiatus hernia and Pots symptoms, I wandered if we have large enough hernia could it push on our hearts and or lungs intermittently to cause some of our POTS symptoms! I have read: Acid leaking from the lower esophagus stimulates the vagus nerves, which run through the gastrointestinal tract. These stimulated nerves cause the nearby airways in the lung to constrict, producing asthma symptoms. http://www.umm.edu/patiented/articles/how_serious_gastroesophageal_reflux_disease_000085_5.htm#ixzz23FNlLFfg So does that mean that by this process the vagus nerve can cause HR issues and other stuff?!

I am not sure how to do the poll thing, so can I just ask how many of you guys have a clinical diagnosis of Hiatus Hernia and also have ANS dysfunction of one form or another. Thank you.

Thanks for the update Issie, I may well try them just in case I. Sorry could not PM you not sure why but seem to be unable to write any PM's not computer literate excuse the pun lol.

Well my 3 children all have some form of ANS dysfunction diagnosed as POTS at the moment! They all suffer the same symptoms, Fatigue, brain fog, dizziness, resting bradicardia, sudden bouts of breathlessness, arrhythmia's, exercise intolerance, GI issues and the list goes on but show different TTT results. I have the same symptoms but am officially undiagnosed, but I have low resting BP that goes high on standing even with 2 BP meds and was the same before meds. Myself and my children all have a diagnosis of Classical EDS. Plus they also all showed signs of some form of ANS dysfunction from quite young, they all remember blacking out from 5/6 years old. My children see the same consultant Rach73 so I guess the Dr.'s are going to have fun with us!

Do you have EDS? I have had an episode of frank bleeding that was quite concerning not to be too graphic the toilet bowl looked like a crime scene, also had the upper GI bleeds the tar like poo. Had a colonoscopy which ruled out any nasties, oh this was done without sedation, that was the norm in the hospital I went to, no problem, got home quite quickly after the test. Anyway years after I found out I had EDS on discussing the family history of GI bleeds I was told by my geneticist that it was probably due the EDS. So if you have EDS or another connective tissue disorder this could be the issue, hope it all works out well for you anyway.

Thought I had heard it all! But tuning folk on forehead trick, now surly if this so called Dr. is adamant that you should have felt it on both sides she might want to be a little concerned that you only felt it on one side! Not just assume you made this up, so know how you feel though. Sorry you have to put up with this will feeling bad as well.

Oh Ami I hope you were able to enjoy your get together.