anna

My son had to trial Fludrocortisone again so we did a week of BP reading prior to the Fludro, then took reading over the last 2/3 weeks he has been on them and we have found something odd going on. Prior meds; sitting BP in the 90-100/60-70 with HR in the 80 Standing BP120's/80's HR 60-90's Then on med's sitting BP in 90-100/50-60 HR 57- 107 Standing BP 120's-130's /90's HR 50-110's My son has to date always had lowish BP on sitting getting lower the longer he is still, but staying the same or dropping some on standing, now it is going up the longer he stands or moves around and going down the longer he is still. Any ideas why, it does not seem to be anything to do with the Fludro as it was happening before he started it.

KCmom, In theory your son might be hypermobile then, have you looked into to Joint Hypermobility Syndrome? This may be worth a read, http://www.hypermobility.org/whatishms.php

This sounds like how I get when I have too much Adrenalin running around my body, which I guess might be the case if you have a bad virus, it does not matter how much I drink it just flows out straight away. The burning could be that your body is concentrating your urine too much, I also have this happen.

dizzyallie Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue condition characterised by skin extensibility, joint hypermobility and tissue fragility. There are six different types of EDS and they are classified according to signs and symptoms. EDS is caused by a defect in a protein called collagen. There are more than 30 different types of collagen and it is the main building block of the body providing strength and support. Examples of areas it affects are ligaments, tendons and organs. Consequently, when the collagen itself is defective, it can produce many problems throughout the body. The prevalence of EDS is known to affect both males and females of all races and ethnic backgrounds. The exact incidence is notknown, but is estimated at 1 in 5000, however, research is showing that it is more common. Diagnosis is based on the presenting symptoms and family history of a patient. Many EDS sufferers, however, do not fit conveniently into the definition of a specific type, and are frequently misdiagnosed. A skin biopsy may be taken to confirm the diagnosis and determine the type. Of the six types of EDS, the Hypermobility type is the only one that does not have a specific test. In the other five cases, the specific gene mutation has been identified and can be tested for.

Yep me and my children have constant light headedness with dizziness when we move our heads at all regardless of body position, also long bouts of debilitating vertigo. It is a a running joke in our family that we have to pair up my daughter that walks to the left with my son that walks to the right so that they can walk in a straight line!! LoL

yep more in the 50's the same goes for my children as well.

I have bad myoclonic jerks, had them since babyhood, my are always worse when I am coming down with something, I am worn out or when my ANS stuff is taking a turn for the worse. My myoclonus has been linked to my EDS as it comes down the side of the family that have EDS as well, my 3 children are also affected in varying degrees. My geneticist feels they are linked to the EDS, which makes sense because I do jerk much more when my joints are over used badly! What I mean is if I keep my body well supported with good exercise I have less jerks, but when I over do it and do stuff that makes me more unstable my jerks are so much worse. I have found that all the meds used to treat the myoclonus do nothing except make me spaced out, but I found very very small doses of muscle relaxant works the best on me. Sorry I do not recall if your son is an EDSer or hypermobile, but I have met many bendy folk on line that have myoclonus as well. Oh and when my sister went for tests her neuro explained he thought that her myoclonus could be linked to her bodies reaction to adrenalin,that could link in well to POTS I think.

Hi folks thank you for your response, I have told my daughter to get to her GP and try and get referral to the Allergy/Immunology clinic, it is just one thing after an other!!!

I think I will start some experiments of my own now, I am glad you have found the right cocktail well done.

Sorry but any one any ideas what might be going on!

Oh yes does this problem Exercise-induced anaphylaxis have anything to do with MCAD: http://emedicine.medscape.com/article/886641-overview As my son can have an odd mouth and or swollen face, after heavy exercise sometimes.

My daughter gets bouts of an extra swollen throat, it comes out of the blue and make breathing more difficult, last night the poor thing texted me to say her throat was big again and her mouth and tongue were felling odd. She took a prescription antihistamine (Allegra) which she was given for this issue, by one of her GP's and she later let me know that her throat and tongue felt better, thank goodness. The thing is does this sound like it could be MCAD related, one of my boys also gets similar issues? My daughter has had bouts of strep throat, tonsillitis, chest infections and so on for the last 2 years as well and her GP's just keep saying she needs her tonsils out and she will be fine!! My daughter is 20 by the way and has had one enlarged tonsil since she was 2/3 years old, so we do not think her tonsils are the real problem.

Emma have you had tests to rule out pheo? http://www.medicinenet.com/pheochromocytoma/article.htm I have PMed you the Dr.'s name ok.

This article is very useful, now I understand more what the normal response should be! Thanks for posting it.

Issie, I found I have done better since being on Calcium Channel Blockers, but I know they are not tolerated well by many folk much like BB's but so far I find they help. My take on the lax blood vessels is that we do need them lax but our body gets confused signals as our blood flow is somewhat turbulent. Imagine that parts of our long length of blood vessels are nice and acting normal but then you get to a part that has ballooned out loads; think of it like you are traveling along a 3 lane road that suddenly goes into a 5 lane road then back to a 3 lane road your nice constant flow is disturbed. My guess that when this happens your body does every thing it can to improve blood flow and that is when we have problems! Nowwhat, do you think the small fibre neuropathy symptoms might be due to EDS, my children reduced feeling in hands and feet, the other day I had to pull my one lad away from the radiator that he had lent against as he could not feel how hot it was! I too have numbness and lack of sensation in patches all over from head to toe!

So much for eating our fruit and vegetables as they are good for us!! Issie re the constricted vains and feeling you need to be vasodilated, I am the same, I am sure my whole high BP comes from over twitchy blood vessels that spasm and try to constrict when they stretch too much (due to the collagen defect), I seem better when more dilated.

My children are very sensitive to any form of milk, that led me down the path of lactose intolerance, then I started thinking about all forms of sugar intolerance!

I have not met Prof. M or his team, my daughter was referred to him but she was just starting UNI so she had to give up her place as she could not give up the week or so for travel testing and so on, my boys had been referred to him but our cardio found out they are to young to get on his list at the mo as they are only 16 years old. I have heard good things about a Dr. in Bristol I think one member here has mentioned his name but I do not recall it at the mo sorry. It is a big pain if your local consultant can not do the stress test there, have you had an echo, event, monitor and such like yet? Well it took quite a long time to get somewhere with my children's ANS stuff, but we seem to have hit upon a DR. locally (Devon) that has an interest in POTS and ANS dysfunction, he consults with Prof. M so that is very helpful. I do not think you are wrong to want to find out what is going on with you it is also horrid not being taken seriously. Did you find that your chest pain has got worse since being on BB's I could not function on any of the BB's I was put on, felt like an ton weight was pushing on my whole body when I moved it was such an effort to do anything when on them. I have found I have done better on Calcium Channel Blockers.

http://www.hindawi.com/journals/ijn/2011/934659/

Emma did I get it right are you in the UK? Are you due to see Prof. M and his team? Do you live anywhere near Bristol? Oh so sorry for the lot of questions.

This is how I get when I am having a run of PAC's, did you say you are hyper POTS?!

I just found this snippet of info on another site; 10% of people who have emphysema ~ have the alpha1antitrypsin deficiency. Have you looked into this at all?!

My children and I were invited to and attended an EDS master class last week! I found out some very interesting info while there, one being that the powers that be were in the mist of re-classifiying EDS, now I believe the idea is to do away with the EDS Hypermobility label! Also that many of the top Dr. folk studying HEDS and Hypermobility syndrome think that they are one of the same thing and most likely due to an autoimmune defect of some sort, there was some talk of the last CFS study that showed many CFS patients benefited from the trial of rituximab and how HMS/HEDS possibly had the same root cause.

Me and my children have had normal Echos, but this test is of course done lying flat, I really really want to know what would be picked up if an Echo could be done when my legs are down, or better still while I am standing. All my Dr.'s can hear my heart murmur when I am sat or standing, same for my children, but nothing shows up on an Echo!

Yep all the time for me too and all 3 of my children have this problem as well it is there all the time.