anna

I get this as well it is worse when I am tied or worn out.

One of my boys blacks out many times when sat on the bus to college, other son tends to be more postural near blackouts but has had some drop attack like episodes, gets up too fast and blacks out and falls, he had clearly noted postural hypotention on his TTT. My daughter blacks out not quite full drop faints, sitting down, lying down, standing up, her TTT showed massive BP drops I think the Dr. doing my daughters last TTT was a little puzzled and wandered about his machines when daughters BP's came out at 22/7 and she was still conscious, ok very groggy but still open eyed. It seems my children have issues when they are still too long, they all have EDS so that seems to factor in due to more stretchy blood vessels. Had your daughter been still for a while could that be the problem?!

This got me thinking as two of my children are on sodium tablets! Think we will have to look at some different meds now really do not know what to do for the best sometimes.

Could she be having some form of hypoxia due to drops in her BP I would ask her Dr's to keep an eye on your daughters oxygen levels after her faints. I note your daughter has asthma really think you need the O2 levels checking when your daughter has these episodes. Hope you find out what is going on soon.

All 3 of my children have POTS/ ANS dysfunction they 1 has Autism the other 2 are dyslexic and dyspraxic as am I.

Licorice root has been used as a remedy for various disorders throughout history. It can sometimes be used as an alternative to Florinef. Licorice root does have some side effects, and patients should get a physician's approval before taking it. I think most of the folk on here that use Liquorice were at some point advised to try Florinef, licorice has other properties like caliming down the GI tract so is also helpful if you have ulcers or slow gastric transit.

I have visual symptoms which are anything from white zig zags to loss of vision in one or both eyes, also get difficulty finding the words I want to say, I get numb from head to toe also get worsening of my Tintanus, sometimes hearing gets bad as well.

Oh issie can you tell me the name of herb that similar to Diomox works would like to give it a try.

I was far more POTSie when I was told to cut back on my salt intake, plus my BP is much higher even with BP med's if I do not use salt. I have always had difficulty keeping fluid in so I am sure when I cut back on the salt I feel worse this is because I am not like other folk with regular essential Hypertension.

Relax86 do you by chance have EDS as well as POTs?

Plus most of her actual research is primarily MS linked, as Dr D stats herself their were more MS Dr. and researchers interested in her ideas, thus the leaning to studies is more to MS than just EDS and POTs.

That is very expensive, have a look at Dr. D web site I am sure you will find info there and for free!

It is nice to know I am not the only one then

Ok I am an odd one, going in the water makes me need to keep getting out to make bathroom visits to pass copious amounts of water. It is so odd.

Well done, that is brill.

Any chance you could let me know who the Mast cell DR. is please still trying to get to the bottom of the weird and wonderful issues myself and the kids have, thanks.

Wishing you a safe journey, sorry you are having to go through this it must be so scary.

So it looks like many of us here have low resting HR so what are your thoughts on BB's given Beta blockers are supposed to lower HR, my kids Dr. wants them to possibly give BB' a try but I am not sure about this as mine and my children's resting sitting HR is in the 50's when recumbent it is even lower!!

I think you might be in the same boat if you go to see a cardio if they are not totally ANS Dysfunction savvy. I think the UK medics do tend to be a bit more let's say 'careful' when scripting off label. My kids Cardio did mention that Glyn Thomas was seeing quite a few dysautomia and EDS patients so my guess is he might be of some help. Would you be ok PMing me the name of the Dr. you mentioned.

I thought this may be of interest to some! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950229/ Inherited Long QT Syndrome, a cardiac arrhythmia that predisposes to the often lethal ventricular fibrillation, is commonly linked to mutations in KCNQ1. The KCNQ1 voltage-gated K+ channel α subunit passes ventricular myocyte K+ current that helps bring a timely end to each heart-beat. KCNQ1, like many K+ channel α subunits, is regulated by KCNE β subunits, inherited mutations in which also associate with Long QT Syndrome. KCNQ1 and KCNE mutations are also associated with atrial fibrillation. It has long been known that thyroid status strongly influences cardiac function, and that thyroid dysfunction causes abnormal cardiac structure and rhythm. We recently discovered that KCNQ1 and KCNE2 form a thyroid-stimulating hormone-stimulated K+ channel in the thyroid that is required for normal thyroid hormone biosynthesis. Here, we review this novel genetic link between cardiac and thyroid physiology and pathology, and its potential influence upon future therapeutic strategies in cardiac and thyroid disease.

Sending lots of positive energy, hope this set back gets resolved soon, poor thing.

This would be a good opportunity for some Dr. to take them on board and see if anything crops up. I personally would be looking at a few conditions like; 1) nutcracker syndrome http://www.phlebolym...acker-syndrome/ 2) Dopamine beta-hydroxylase (DBH) deficiency http://www.ncbi.nlm..../books/NBK1474/ 3) human norepinephrine transporter gene, http://en.wikipedia....ine_transporter You also might want to contact a few of the Dr.'s researching ANS dysfunction around the world as your daughters situation my be of great help to them. My twin boys now definitely look non- identical but very oddly had one shared placenta which we can only assume must have fused but the Dr.'s were all confused as they seemed to have one amnionic sack, on their medical birth record they are marked down as identical twins! Both boys have some form of ANS dysfunction.

Not sure where you had your TTT but the official HUTT should be done as shows below, plus one of mine and my children's most annoying symptoms is brain fog. What happens during the test? First you will lie flat on your back. Your initial (baseline) blood pressure and EKG data will be recorded as you lie quietly before the test begins. After resting for 15 minutes, the test will be started. Your blood pressure and heart rate will be constantly monitored throughout the test. Your blood pressure is measured on a minute-by-minute basis, and your heart rate is displayed continuously on the monitor and recorded every minute. The data is recorded and stored in a computer. The motorized table is controlled by a nurse or technician and will be tilted to different angles during the test. The table will be tilted at several angles in sequence (30 degrees for 2 minutes, then 45 degrees for 2 minutes, then 70 degrees for up to 45 minutes). You will always be tilted upright so your head is above your feet; you will never be tilted upside-down. When the table is titled at 30 and 45 degrees, you will feel as if you are lying on a steep hill. When it is tilted at 70 degrees, you will be in an upright position and your feet will be supported by the footboard at the end of the table. Qualified medical personnel will be present during the entire test. http://my.clevelandclinic.org/heart/services/tests/electrocard/hut.aspx

This does seem to be a problem for quite a few of us, I just wish we could get to the bottom of all this weird goings on.

No idea if there are any papers on this issue, but I am sure something does happen to our EDS hearts when we stand, I have tried to no avail to get a standing echo done as in my view if my symptoms are worse when standing or sitting I need my heart checking upright. I will be very interested to see the results of your stress test, keep us posted please.