anna

I can not do cardio stuff without blacking out, I have been exercise intolerant since childhood, always did exercise was an acrobat, gymnast, could do floor work, but I could not for the life of me run more than 100m on a slight incline without nearly passing out. I have to say I wish Dr.'s would take on board that POTS is just an umbrella term and that it has lots of different causes. I have normal to low blood pressure supine/sitting but high to dangerously high on standing even with BP meds, Now when I do normal exercise not pushing cardio too much I am fine then when my exceed my limits my systolic and Diastolic rise rapidly (only systolic should rise during Aerobic exercise) not a good feeling really. But my GP does not get it and tells me I need to be doing a good cardio workout!!!

It sounds like a very useful examination tool, I not heard of it before finding that article.

Could it be that most of us live in a state of low level infection of one sort or an other, which keeps our ANS symptoms elevated. When we have antibiotics the symptoms reduce because we are for a while in a lower state of infection.

I just found a very interesting study on Autism and ANS dysfunction. Reduced cardiac parasympathetic activity in children with autism Author(s): Ming, X (Ming, X); Julu, POO (Julu, POO); Brimacombe, M (Brimacombe, M); Connor, S (Connor, S); Daniels, ML (Daniels, ML) Source: BRAIN & DEVELOPMENT Volume: 27 Issue: 7 Pages: 509-516 DOI: 10.1016/j.braindev.2005.01.003 Published: OCT 2005 Times Cited: 24 (from Web of Science) Cited References: 38 Abstract: Many of the clinical symptoms of autism suggest autonomic dysfunction. The aim of this study was to measure baseline cardiovascular autonomic function in children with autism using the NeuroScope, a device that can measure this brainstem function in real-time. Resting cardiac vagal tone (CVT), cardiac sensitivity to baroreflex (CSB), mean arterial blood pressure (MAP), diastolic blood pressure (DBP), systolic blood pressure (SBP) and heart rate (HR) were recorded in three different groups of children. The symptomatic group (n = 15) consisted of those with autism who exhibited symptoms or signs of autonomic dysfunction. The asymptomatic group (n = 13) consisted of children with autism but without symptoms or signs of autonomic dysfunction and the healthy children were in the control group (n = 117). The CVT and CSB were significantly lower in association with a significant elevation in HR, MAP and DBP in all children with autism compared with the healthy controls. Further more, the levels of CVT and CSB were lower in the symptomatic than in the asymptomatic group. The levels of CVT and CSB were not related to age in all the three groups. These results suggest that there is low baseline cardiac parasympathetic activity with evidence of elevated sympathetic tone in children with autism whether or not they have symptoms or signs of autonomic abnormalities. © 2005 Elsevier B.V. All rights reserved. Document Type: Article

Well done keep it up.

Hello Linda I have no idea if you have ever been on the inspire site but one lady has listed a very in depth post on her issues http://www.inspire.com/groups/ehlers-danlos-national-foundation/journal/mast-cells-and-related-conditions/ not sure if it will be of any use just a thought. Take care Anna

I think histamine intolerance could be a lead have a look at this: http://www.histamineintolerance.org.uk/about/first-steps

Is it possible that the blood lose from her period may be contributing to even less blood flow in general thus leading to muscle cramps?! Eating draws the blood to the stomach so maybe these points together lead to this problem. Just guessing hope you find out what is going on soon.

Martiz, It is so frustrating when each practice works differently but seem to think we know what they want of us. northerndarlene, "Can a person have EDS without being flexible? " You could have EDS and not think you are flexible! you could have mild flexibility not like the text book EDS pictures one sees on line. It is possible to have been flexible and have lost this with age and wear and tear. I note you have Fibro, TOS, CFS, disc issues and migraines all these conditions have been linked with EDS and Joint Hypermobility Syndrome so it might be worth looking into EDS as a possibility.

There are some very very expensive genetic testing for Classical EDS and Vascular EDS and some other types but no biological test for Hypermobile EDS as of this time. Do you think they may have been wanting to rule out other disorders!? In the UK most rheumatologists want you to have your ANA's done to rule out RA and such like.

Did your Dr. say anything about NET disorder?! http://en.wikipedia.org/wiki/Norepinephrine_transporter

I am 5' 7" was a UK size 12/14 (US size 8/10 I think) until my late 30's early 40's then I suddenly put on tons of weight and can not shift it how ever hard I try!! So now Dr's tend to think that my issues are all weight related!!

My family have a Myoclonic /dystonia presentation on the same side as our Classical EDS but we all have symptoms of ANS dysfunction as well, one of our Dr.'s is looking at possibly checking for the gene involved as years back I was diagnosed with Hereditary Essential Myoclonus, which is now under the Myoclonus Dystonia name. http://www.ncbi.nlm.nih.gov/books/NBK1414/

Maybe it is something Mayo do when looking into hyper Pots, but did they do the supine and standing norepinephrine http://www.stars-us.org/files/file/Clinical%20papers/110819-tl-Hyper-POTS%20Proof%20copy.pdf this is a good article by Dr. Grubb. If not I do not understand why they have said you do not met the Hyper POTS criteria, as they did not do the test for it, does that make sense?!

I find that I do not do well in the extremes as well, too cold or too hot and my body does not perform well! I always feel exhausted in the heat and find humid climates difficulty breathing and the very cold I find I need to expel fluid all the time! I find it very hard to retain fluid in the cold. Barometer changes to low pressure seem to be a problem as well.

I have not had a good explanation for this from my doctors yet, but my 3 children are the same as me.

This is the sort of thing I have had all my life! Stairs, inclines, or carrying something heavy trigers this response! I am fine on the flat and can walk for miles, unless it is very hot and humid, I used to be one of my schools fastest 100m sprinters, but would always get the symptoms you describe, northendarlene. So I can not put it down to de conditioning in fact, my pulmonary tests came back very normal, for someone that was younger than me at the time ha ha, but the thing that was picked up then was that my lungs expanded way more than the average, so I was told I should be extra fit!

My children have all the POTS symptoms some times they have the tachycardia sometimes they do not, their cardiologist and Dr. with a POTS interest, said they feel this is just the way POTS has presented in them.

Wow so sorry you are having such problems, hope your sodium level is up to more normal limits now!

This may sound really odd but, most of the dog owners on the US Poodle site I go on swear by plain pumpkin tinned or fresh for there dogs with the doggy equivalent of gastritis! I just found this article pumpkin does seem to have many beneficial properties. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3271396/

Hi thanks for the post, I think Eosinophilic disorders need to be looked into just like Mast cell disorders, as they do seem to play havoc with much of the body possibly on par with MCAD.

Can you buy Gaviscon Advance in the US not sure what other name if any it might be sold under, but it is one of the main thing that helps reduce the pain my children get from the bouts of gastritis and ulcers my children get from their GORD.

Really then it is quite obvious, that when articles like the British Heart foundation one http://www.bhf.org.u...aspx?page=13311 quoting Dr. Levine's study get printed in places meant for the medical profession to read, many of them would take it as it reads period! as most medics do not have time to go through all the theories and data out their. So this protocol ends up being used as the definitive way to treat POTS, no matter the cause and ultimately no matter the cost! We have seen this happen in the UK with regards to treating all CFS/ME patients; our National Institute of Clinical Excellence, whom set statutory guidelines to all the NHS (Our national health service) decided to go with the research work that stated that CFS/ME is best treated with CBT and GET(Graded Exercise Therapy). A large number of specialists in the field of CFS/ME have explained to 'NICE' that GET has been proved to be ineffective and probably actually dangerous to many CFS/ME patients, but NICE have continued to argue that CBT and GET is the way CFS/ME has to be treated.

Conclusions Patients with POTS had a smaller heart coupled with reduced blood volume compared with healthy controls. We therefore propose the name the Grinch syndrome to focus on this pathophysiologic state. The marked orthostatic tachycardia in these patients seemed to be a physiologic compensatory response to a smaller stroke volume that was attributable to cardiac atrophy and hypovolemia. The function of the autonomic nervous system was intact in POTS patients. Short-term exercise training increased cardiac size and mass and expanded blood and plasma volume, and thus improved or even cured POTS. These results suggest that POTS per se is indeed a consequence of deconditioning and that carefully prescribed exercise training can be used as an effective nondrug therapy for POTS patients. http://content.onlinejacc.org/cgi/reprint/55/25/2858.pdf What gets me a little fed up is that there is some logic and sound medical theory behind this study but statements like: "Short-term exercise training increased cardiac size and mass and expanded blood and plasma volume, and thus improved or even cured POTS. These results suggest that POTS per se is indeed a consequence of deconditioning and that carefully prescribed exercise training can be used as an effective nondrug therapy for POTS patients." Is just so short sighted, it deliberately groups all forms POTS together to have better impact. Maybe the whole small or weak heart muscle has some credence given so many EDS folk have POTS symptoms and EDS folk tend to have poor muscle tone and a problem perfecting good muscle tone. Thus this could be a real point that needs looking into in much more depth.

On an other well used UK site; http://www.webmd.boots.com/heart-disease/news/20110621/exercise-may-help-treat-rare-heart-condition "Grinch Syndrome' or Postural Orthopaedic Tachycardia Syndrome (POTS), is a condition in which the heart rates increases if the patient sits or stands upright." I must say at least this article does put in a good small piece (medical view from Dr. Grubb) at the end of the article!