anna

Are you by chance Hypermobile in your spine, or hips?!, I ask because I have had bad lower back pain for many many years, I have very noticeable lumber lordosis, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002240/ though because I can lift my leg without too much pain the straight leg test: http://www.facebook.com/pages/Lasegues-sign/130926020283716?sk=info my GP said I could not have disk problems, well he never took my joint hypermobility into the equation, so I still think I have disc problems!! I think a standing MRI would be a good way to look for such problems, not sure if CT scan would pick it up, but a good old fashioned X-ray can pick up disc issues, when you have a good radiographer on board!

Just been reading a bit about Insomnia in relation to ANS dysfunction and found this bit of info quite interesting;- In a recent retrospective study, a reduction of low-frequency component of heart rate variability was observed during wakefulness in patients initially diagnosed with idiopathic REM sleep behavior disorder compared with controls; however, no difference was detected among REM sleep behavior disorder patients who subsequently did or did not develop a neurodegenerative disease (Postuma et al 2009a; (Kashihara et al 2010). All these data and the importance of finding early markers of neurodegenerative disease indicate that systematic prospective autonomic investigations are required in idiopathic REM sleep behavior disorder patients to better clarify the association between autonomic dysfunction and REM sleep behavior disorder and their predictive role in the early diagnosis of neurodegenerative diseases. http://www.medlink.com/medlinkcontent.asp

Same here, I can walk fine on the level but inclines kick in the tight chest, breathlessness, head pain and nausea. This is worse when I am generally more symptomatic. My children are the same, my daughter can be doing a full on dance performance, without getting any more worn out than the next person, but if she has to go up stairs, she becomes very symptomatic, this surly can not be deconditioning it does not make sense! Has this phenomenon ever been looked into more it could used as a diagnostic tool?!

Thought it might be of interest, given how many of us have bad Guts. http://www.docblock....inlecter-story/

When one of my boys tried Midodrine he had the hair stand on end thing, then he got very very hot and total body itchy, and his hands and feet had major blood pooling even when he laid down.

Hi Ernie, have you looked at: Disease characteristics. Dopamine beta-hydroxylase (DBH) deficiency is characterized by normal parasympathetic and sympathetic cholinergic function and lack of sympathetic noradrenergic function. Affected individuals exhibit profound deficits in autonomic regulation of cardiovascular function that predispose to orthostatic hypotension. Although DBH deficiency appears to be present from birth, the diagnosis is not generally recognized until late childhood. The combination of ptosis of the eyelids in infants and children, together with hypotension, is suggestive of the disease. In the perinatal period, DBH deficiency has been complicated by vomiting, dehydration, hypotension, hypothermia, and profound hypoglycemia requiring repeated hospitalization; children have reduced exercise capacity. By early adulthood, individuals have profound orthostatic hypotension, greatly reduced exercise tolerance, ptosis of the eyelids, and nasal stuffiness. Presyncopal symptoms include dizziness, blurred vision, dyspnea, nuchal discomfort, and chest pain. Life expectancy is unknown. http://www.ncbi.nlm.nih.gov/books/NBK1474/ I am sure with such a good size family group some Dr. out their would be very very happy indeed to do some gene sampling on you, modern tech has made gene testing a more viable, in the UK their are a few Dr.'s I am sure that would love your family to run some ideas by. Maybe you need to market your family!! If you find a faulty gene amongst you all most Dr.'s would have a very hard time denying your poor son medical care.

Lots of stretch Mark's, on tummy, but did have 8 lb twins, went from 26 inch waist to 54 inch with my dear boys lots of water to cushion them well!! But I did have lots of stretch marks on my legs back and hips from my teens, as do my children, we have EDS.

Lots of studies going on in the sports medicine front in the UK focusing on beetroot. This article is quite interesting: http://www.exeter.ac.uk/research/news/title_145007_en.html

To add to this each mix of herbs is tailer made, two people may go to the same Dr. for the exact same problem, but they will more often than not get a different mix of herbs, as TCM takes account of so much more than just the problem you go to the Dr. with.

My Fraternal twin boys both have some form of ANS dysfunction.

Baby No. 1 6lbs 14oz Major POTs flare after she was born, plus post part um haemorrhage Twins baby 2&3 8lbs 4oz & 7lb 14oz Big POTS flare & major post partum haemorrhage

The main herb used in the tonics and tablets I used is Dong quai, this is used mainly for females, much as Ginseng is used to boost mens energy and stimulate blood flow, many Chinese herbs are male or female sensitive. http://www.mayoclinic.com/health/dong-quai/NS_patient-Dongquai

Not tried this, but I have tried some other TCM that have a function to increase blood flow, I did not find that they worked for me, but I think this may be because I do not absorb food, vitamins or anything well!! My in laws use many concoctions and find many are helpful for various circulation problems.

This happens to my children as well, our GP is trying to find out why this happens!! We will let you know if we get anywhere with this ok!

The whole exercise ? concerns me a little! My 3 children have done classical dance, ballet and contemporary for many years 2 of my children are on dance courses and also dance professionally here and there, so they spend a lot of time doing proper cardio workouts. My son spends around 5 hours a day minimum of 4 days a week dancing and my daughter even more but, they still suffer from, lightheadedness, cognitive fog, inability to hold onto fluids, whiteouts, major fatigue big time blood pooling and more on a daily basis. What I am worried about is that as soon as they stop dancing they may get even worse symptoms. Oh and their heart echos show normal size hearts BTW.

Hi Kim, has anyone ever mentioned connective tissue disorders to you?! It is quite possible to have a CSF leak if you have anyone of a number of connective tissue disorders. Could you check for glucose, by using urine analysis dip sticks, might that work!!

200/150 officially picked up at Dr.'s but 235/155 on home monitor a good one at that oh and yes I felt like ***** much like I do when it goes low!!! then lows of 85/50 don't you love fluctuating BP's !!!

I am sure in the years to come medicine will find that stress in 'mental health' terms does not actually exist; I am sure it will be found to be caused by some, at present poorly understood, adrenal problems or some such thing!!! Ok that is my nutty thought for the day, back to the matter at hand! Even if you do not meet the criteria for POTS, but you have symptoms that interfere with your daily life it needs a more careful looking into. A logical step I would have thought, just to help you be able to continue to function as a parent and worker. I would say keep a chart/diary on how you feel do your BP HR when you feel bad see if it links to anything going on in your day any food triggers, any other environmental triggers and so on. I think if you have good documented evidence you might be able to find out what is going on.

Oh also you may want to look at: http://www.ncbi.nlm.nih.gov/books/NBK1474/ my son's Dr. is screening them for this as my husbands father had some form of fatal Autonomic failure!! (he had many VEDS traits) To add to this my maternal grand father died from what was diagnosed at the time as Parkison's disease related complications. Sorry but I think Mayo is being a little silly if it does not feel the need to look further into EDS issues.

Hi Jen seems that you do not fit neatly into the Mayo perfect POTS patient profile!!! I live in the UK but on my cyber journey around the world I have noticed that the USA has a number of hospitals that have become 'the" place to be re POTS and other ANS conditions, but it almost seems like they are all competing to back up their own theories as to why POTS exists! So it seems Mayo does not think POTS could be due to poor vascular tone due to EDS then!!! On a slight change of topic I am a tad shocked that your geneticist did not want to look further into the EDS possibility, I realise you are having work ups for more concerning issues, but surely it makes more sense to assume that these problems are possibly linked in some way and work from there not the other way around!! On the UK EDS site there are a number of members with EDS and Primary immune deficiency!!

I do not recall do you have EDS?! I get the double vision, when tired, (this has been put down to lens ligaments being over worked and wanting a rest due to EDS). I also get lots of interesting things floating in my field of vision, this might be of use: http://www.migraine-aura.org/content/e25968/e26078/e26305/index_en.html My problem has been put down to migraines and floaters due to normal eye debris, I have had the floaters ever since I can remember. What I would say is that it needs a Dr. to look into it in more depth, I hope you can find a Dr. to sort this out for you soon.

Oh sorry Sue1234 that is where I found that link I mentioned above, I stuck it on my favourites but forgot where I had found it!!!

I just posted a link under a post on anxiety it my be of help if you follow the link to the free full article it is interesting reading.

Oh and add this to the anxiety dater as well! http://www.ncbi.nlm.nih.gov/pubmed/18977825

I realise you may have already done this but just in case! have you tried to eat/drink your food basically make what ever you eat into a smoothie! When my son was loosing weight rapidly due to EDS?POTS gut issues the only thing he could manage was to drink he was being sick and had bad bad nausea 24/7 anyway for him it helped to stop him loosing much more weight. Have you looked at gastroparisis diets?! lots of normal foods need to be avoided as they make things worse.