anna

I think vaccines could definitely add to the 'environmental load' and trigger all manor of problems in genetically susceptible individuals. I hate the use of 2,3...in one vaccinations and think they over load and trigger the wrong/altered defence mechanism, which could be detrimental in the long run in some people. My children have turned out to have some sort of mild primary immune deficiency, as they have no antibodies to rubella after the MMR vaccine plus the all 3 had natural DR. diagnosed, rubella and still no antibodies!! There is still so so much to learned about the human body I think we are just starting to understand how complex we all are!!

I think along the same lines as brethor9; I have 1 son diagnosed with high functioning autism, he showed signs from birth really, saying that he also showed signs of EDS and POTS from birth. GI issues, very strange circulation, blood pooling on the the side in which he was laid, literally would go purple on the side he was laid and white on the apposing side, so I often wander if that had something to do with his presentation of his ASD. My other two children are both under the ASD umbrella, having sensory integration issues, sever OCD, many mild autistic traits as do I, we also all have EDS, POTS!!

Kids lol

I am glad you are back home and feeling a bit better, you have been through it rather, take care now ok.

You really need to get back to the Dr.'s as you may also be reacting or withdrawing from one of the meds used for your op.

Very very interesting

I am not sure if it of any help but we use an infrared skin thermometer, the following article may be of use ok: http://www.ncbi.nlm.nih.gov/pubmed/21651612

That issue is an ongoing joke in my house my daughter without fail walks to her right and one of my boys walks to the left so much so we joke that when they are out together is the only time they walk a straight line as they walk into each other lol

Me my dads family and it seems my husband have some form of Autonomic nervous system dysfunction our 3 children are diagnosed with 1 with OI 1 with POTS and 1 with unspecified ANS dysfunction. We do all have Ehlers Danlos syndrome though which does seem to be a major contributing factor in our family.

I'm confused though as to how someone could ignore POTS/dysautonomia. Perhaps if it were mild this would be possible. But many of us are hit so very hard that we could not perform normally no matter how much we wanted to ignore it. And you can't stop yourself from fainting typically by ignoring it!? Lol I know what you mean MG, I do think our family are a bit odd to be honest, we are not full fainters, we do all have bouts of being bed bound but are not continually grounded. I guess an example of what my families men folk are like would be; some months ago my brother finally after months of not wanting to bother the Dr. actually got an appointment. He went to his GP whom sent him straight to hospital after a work up by the cardio team my brother gets to see the Professor of cardiology at one of the UK's top heart hospitals. The prof. exclaims to my brother that my brother must be the most stoic person he has ever seen as he has never seen some one still standing let alone walking around and still working with the amount of heart failure and Afib he was having.I also witnessed this stoic nature with my daughter when she had her TTT our POTS specialist was particular shocked that my daughter was still conscious when her BP dropped to 22/7 on a number of occasions, he even did a quick check of the machinery as he could not quite believe it lol.So I guess we may be a bit odd as a family then lol. Angela this article is rather interesting thank you.

Thanks Rama for the post. Yep Midodrine did not go down well with my children either Issie.

I am not sure if it is primarily a matter of female hormones influencing outcomes, I realise that much available research shows this high female ratio re autoimmune conditions but I still think it is far more linked to familial pre disposition. My family for example, I have 3 children 2 boys one girl all affected by autonomic nervous system dysfunction, as am I, my late dad, his dad many cousins male and female alike. To be honest what I can say I have noticed from my family going back some generations was that as the men were the primary bread winners, they never bothered with Dr.'s until it was too late. So my guessing is that regardless of modern culture, men properly do not bother to present to their Dr.'s even when they are very ill, thus the statistics will tend to be female heavy.

Is this the article issie http://www.ncbi.nlm.nih.gov/pubmed/22215709

As horrible as my comment sounds I am glad they found something abnormal in your biopsies! At least it may lead to answers.

I can always remember having this problem from a very young age my children are the same.

I have been taking Valsartan (is used alone or in combination with other medications to treat high blood pressure. It is also used to treat congestive heart failure (condition in which the heart is unable to pump enough blood to the rest of the body) and to improve survival after a heart attack. Valsartan is in a class of medications called angiotensin II receptor antagonists. It works by blocking the action of certain natural substances that tighten the blood vessels, allowing the blood to flow more smoothly and the heart to pump more efficiently) for a long time now. I guess it has reduced some of the very very high spikes, as I can not tolerate BB's at all this was the next option!

Now why on earth did my children's Dysautomnia Dr. never mention that the fact that my 3 children are taken Domperidone 2-3 times a day for gastroparisis might acualy be helping with their OH?! and why oh why was said Dr. talking about reducing this med to use when their gastroparisis is bad?! I found this article explained something about domperidone that I never had a clue about. PubMedTIPeripheral dopaminergic blockade for the treatment of diabetic orthostatic hypotension.AULopes de Faria SR, Zanella MT, Andriolo A, Ribeiro AB, Chacra ARSOClin Pharmacol Ther. 1988;44(6):670. This study was designed to evaluate the effects of domperidone, a peripheral dopaminergic antagonist, in diabetic patients with symptomatic orthostatic hypotension. Nine patients were admitted to the hospital, placed on a diet containing 150 mEq sodium, and studied for periods of 4 hours, on different days, in the following conditions: (1) supine position, (2) upright posture (UP), (3) UP after 10 mg domperidone, intravenously in bolus, and (4) UP after 3 days of domperidone, 30 mg orally. Before domperidone the mean blood pressure observed in supine position of 132 +/- 37/75 +/- 6 mm Hg fell to 75 +/- 22/57 +/- 13 mm Hg after 2 hours in UP. Acute domperidone did not change the blood pressure response to UP. After 3 days of oral domperidone and in UP for 2 hours, the mean blood pressure value of 89 +/- 21/61 +/- 8 mm Hg was higher than that before domperidone (p less than 0.05), with relief of symptoms in all patients. This blood pressure response to UP has been maintained in six patients who completed 6 months of therapy. No differences were observed in plasma renin activity, aldosterone, sodium, and potassium and in 4-hour urinary excretion of aldosterone, epinephrine, norepinephrine, and dopamine, determined during the UP tests. Administration of domperidone for 3 days reduced the falls in creatinine clearance and the urinary excretion of sodium and potassium induced by UP but did not alter the blood pressure and aldosterone dose-response curves to angiotensin II. Although the mechanism of action is not defined, it is concluded that domperidone is effective for the treatment of orthostatic hypotension in patients with diabetes.ADDivision of Endocrinology, Escola Paulista de Medicina, Sao Paulo, Brazil.PMID3058373

BUT why is my brain dying? I can not answer that but when you find out please let me know, I have my 17 year old son home out of school for 2+ months now as he finds he no longer think properly, he has always had issues with 'brain fog', but now he finds what he could do and understand a few years back makes no sense to him!! Our geneticist did say he has seen this kind of thing happen to a number of his EDS patients, and they are trying to understand why this is happening, he has also run some blood tests to rule out 'Adrenoleukodystrophy' this is all so scary. I hope your Dr. has some ideas for you.

It was Prof. Graham he used to be chair on the DWP medical advisory board.

Prof. M is not the only ANS dysfunction Dr. in the UK, there are some less high profile Dr.'s doing good work around the UK

Spinner I am like you I have always had exercise intolerance, my family are odd ones we can walk ha some years back I could also sprint around, as long as I was on the flat, but should the ground be slightly hilly I am toast! even the smallest of inclines makes me more POTSie, same issue when I carry anything heavy I get really POTSie, my children are the same.

I think you may be dealing with a few things here, 1) Your body is worn out and needs time to get it's energy back, not every body is able to have a child then get on with life as if nothing had happened, for some people having a baby is very hard on their body. I for one took a long time to mend after my twin boys were born. I was in hospital for many weeks very POTSie (but the Dr.'s had no idea about POTS then) and my daughter and her twin brothers were at home without me! 2) You are unwell and far from things you are familiar with, most people feel low when in this situation it is natural to need things of comfort around you. 3) You are in panic mode thinking you will never be well again, it may take time but chances are you will be able to function more normally as time goes by. You seem to have been given a few medicines that have not worked for you, that is not unusual really. Have you been able to eat any of the foods you were bought up on, many holistic practitioners believe we are what we eat and that our bodies have a biological need to eat food from where we came from as it contains important nutrients needed for the different ways our bodies metabolise our food. My husband is Chinese he really truly becomes unwell if he is not able to eat rice based dishes and say eats mainly pasta or wheat based food for a week! Keep writing here where we can all keep an eye on you ok, gentle hugs.

Wow that is brilliant

This is very interesting info please keep posting on this need to get as much info as possible to pass on to my children's Dr.

I would recommend you keep a BP and HR diary/chart I use this chart http://www.vertex42.com/Files/pdfs/1/blood-pressure-log.pdf it is a free use material. Chart your BP and HR for a week then pop back to your GP for advice, in my experience I have found BB's make my low resting HR lower and I get a lot of compensatory stuff going on with my BP!