anna

Possibly it is in your husbands personality, to be the carer, I think maybe your hubby is just being himself! ( I know I do not know your husband so this is just going from what you have written and from what I know of people). If that is the case then this instinct may have gone into overdrive since you got more poorly, does that make sense?! Did your husband have any signs of mild OCD's since you have known him? If so this sort of situation he is can make OCD's so much worse, thus lead to many irrational fears, but CBT (cognitive behaviour therapy) can work well in low level OCDers. If that is not an issue then your hubby might just be having a bit of post traumatic stress which again can be dealt with well with the right type of therapy. Most of what you have written leads me to think that you are a tad like me!! oh poor you ha ha!!! I am a do do do person and hate help from other people, I always need to be in able to fix things myself! Some time back we had someone in doing an assessment for services on my son that has Autism as well as the EDS and ANS stuff, on the report the health professional wrote " mum also has many of the daily struggles that her son faces and in her own right is eligible for support but she has chosen to focus on her children and wants to sort them out first". I think maybe you are like that as well! I will write more on this soon just got to go sort out a poorly son, he's just been sick!!! he we go again!!

Any chance your daughter may have had mild OCD's when younger that have shown up more now, as she has got older?! My daughter has had issues with OCD's since being a toddler, this problem becomes more intense when she is worn out or has any bug in her system. My daughter has been having bad bouts of strep throat, for 3 years now, she will be 20 very soon. We are looking into Primary immunodeficiency at the moment, has your daughter been checked for any of the PI conditions, as there is a link to higher incidents of Autoimmune conditions like Hashimotos in some PI conditions. "Although, most individuals with CVID present first with recurrent bacterial infections, in about 20% of cases the first manifestation of the immune defect is a finding of very low platelets in the blood, or perhaps severe anemia due to destruction of red cells. The autoantibodies may also cause arthritis or endocrine disorders, such as thyroid disease" http://www.immunedisease.com/about-pi/types-of-pi/common-variable-immunodeficiency-cvid.html

I have had symptoms of ANS dysfunction for as long as I can remember. I can recall near faints and grey/whiteouts from 6/7, always exercise intolerant, problems with the heat and cold. I had low BP well into my 30's then it changed to Bp swings that go very high so I have to take meds to lower my BP, I still have a host of odd symptoms!!!! My 3 children have had symptoms since babyhood, my oldest is nearly 20 and still has a host of symptoms.

I was quite shocked when I found out that the Norvovirus was now being noted as one probable cause of idiopathic Gastropererisis. This virus is also known as winter/summer vomiting bug, it is the most common virus known in the food preparation industry, and causes most of the general "food poising" outbreaks, but it tends not to get reported that much as most people just think they have picked up a stomach flu. I must admit I do think this nasty little bug does have a lot to answer too.

I found the infomation on thie following site useful, they list a number of forums within their site:- http://www.immunedisease.com/about-pi/

My husband is Chinese, thus my children are half chinese all 3 have ANS dysfunction, we have tried many TCM, some have helped a little others not. My father in law was a village healer in the new territories in Hong Kong, he used some ancient form of hands on healing on many of the village folk, I think he was quite good at all this. Ironically he came down with a condition the main stream Dr.'s said was like Parkinson's, (lost in translation) but we now believe it was actually PAF. Unfortunately, due to the family basically having to chose Western medicine over TCM, we will never knew whether TCM might have helped reduce his symptoms or have helped him go on longer.

Oh wow I Just found these:-http://www.headbuddy.com.au/

I am not sure if this will be of any use! but my son does long boarding when he is up to it! He found these beanie type helmets made of non-Newtonian fluid, I found this article about them: ABSTRACTS FOR: Heger, Ian Title: A Novel Approach to Protective Helmet Design in Head Injury Prevention: The Use of Non-Newtonian Fluids Final #: 1250 Category: Trauma/Critical Care View Poster Introduction: Protective helmets are designed to prevent catastrophic injuries cause by linear acceleration, such as skull fractures and intracranial bleeds. It is clear that they work for this purpose, as head injury mortalities have declined with their widespread distribution. It is becoming increasingly apparent that milder forms of brain injury have significant morbidity. As it appears that angular acceleration is a significantly contributing factor to these injuries, it would be appropriate to investigate whether designing helmets that mitigate these forces as well may further decrease injury. Our hypothesis is that by adding a non-newtonian fluid layer to a helmet, the fluid will become more solid and ultimately develop stress fractures which dissipates energy. In doing this, energy transmission to the head of the wearer is less and ultimately protects the wearer better. Methods: The Split Hopkinson pressure bar (SHPB) technique is a popular method to impart high rates of loads to extract their high strain rate constitutive properties. We utilized a polymer SHPB (PSHPB) to load a thin layer of ballistic gelatin, 30% corn starch, and colloidal silica under high rates of shear. The power-law constitutive model was be used for determining the viscosity of the fluids and determining their non-newtonian characteristics. The energy dissipated by the non-Newtonian fluids was also calculated. Results: All three fluids exhibited shear-thickening behavior. Shear thickening characteristics ("n" values) for colloidal silica, corn starch, and ballistic gelatin were calculated as 1.3, 1.4, and 2.2 respectively. Energy dissipation for colloidal silica, corn starch, and ballistic gelatin was also calculated. The total energy was 1.5, 1, and 12 Joules and the maximum energy per unit area was 650, 450, and 10,000 Joules/m2, respectively. Conclusions: The addition of non-newtonian fluids to protective helmet devices may offer protection against forces that are available in current helmet devices. This increased protection may offer better protection against mild traumatic brain injury, like concussions. Further experimentation with additional non-newtonian fluids, as well as incorporation of these fluids into helmets for simulated impact testing is desired. My son has one of these:- http://www.boardshop.co.uk/product/IG343d3-nv411-nav.asp They did do lots of colour,s for summer wear too.

Issie I forgot to send you this link! it may be of interest!! http://www.caresfoundation.org/productcart/pc/ncah_late_onset_cah.html

I am thinking it has something to do with either small vessel (Arterioles) in vital areas or vasospasm's of some sort. For a long time I have been thinking my families ANS dysfunction stuff might be due to micro bleeds, for example some bleeding in the adrenal glands could theoretically lead to scaring or blockage of the network of blood vessels supplying the Adrenal cortex thus we might show Addison's type symptoms. The adrenal glands and the thyroid gland are the organs that have the greatest blood supply per gram of tissue. Up to 60 arterioles may enter each adrenal gland. (http://en.wikipedia.org/wiki/Adrenal_gland) . In addition, unilateral adrenal hemorrhage is associated, albeit infrequently, with otherwise uncomplicated pregnancy, neurofibromatosis 1, or long-term nonsteroidal anti-inflammatory drug (NSAID) use. There have been rare reports of idiopathic, spontaneous, unilateral adrenal haemorrhage. http://emedicine.medscape.com/article/126806-clinical#a0218 Issie I recall you mentioned Nutcracker syndrome, I have thought this might have the same micro bleed component. For many years both my boys have had both gross and micro hematuria, as one of my boys had a number of bouts of quite frank bleeding (weeing lots of blood) he was sent to a urologist for a work up, the only thing the Urologist could put this down to was bleeding due to his EDS! The Dr. explained that he had contacted other Dr.'s and discovered that EDS did cause this type of bleeding. After some reading around I came across Nutcracker syndrome and wandered if this was in fact what was going on!!!

We are an odd lot are we not!!!

This would not happen to be a report by a Prof. M would it?!!!

I was put on Valsartan plus a CCB many years ago due to persistent high postural BP swings in the 180/110. I was asked to try Nitro tabs as BP was getting too high and I also had bad Raynad's type symptoms unfortunately the Nitro gave me such bad pressure headaches I could not move my head down as it felt like it would explode so I stopped that med, any way it only brought my BP down very very little, not worth the pain! Now this is the thing that makes no sense to me really; a combo of the Valsartan and CCB lowered my BP moderately while I stuck to a very strict low sodium diet, then my children where diagnosed with OH and POTS and we where told to salt load! Well I could not be bothered to cook separate meals so I just ended eating the salt loaded food as well. Well after a short while of this my BP started to drop to a 'good' level, if I lower my salt intake my BP goes up!!!! Makes no sense to me.

HI KCmom, I do not recall! does you son have EDS as well as POTS?! Just that a number of EDSers seem to have myoclonic jerks diagnosed along with the EDS. We as a family have this problem running through the CEDS side of the family. I have had noticeable movement since being a toddler! the main stay of meds is anti epilepsy drugs but they play havoc on your fatigue and some other ANS stuff!! My son had a bad spell for a while and was prescribed sodium valparate all this med did was make him sooo tiered and not himself. We have found that the myoclonus is worse when the body is tiered or we have a bug in our system!! TLC'mom I do not recall if your daughter has EDS either! I can tell you that surges in female hormones made my jerks worse as well.

Try looking at http://pilatesfoundation.com/newsite2/index.php you might find you build muscle better doing this form of exercise, it helps build up on the very important small muscle groups. My children have classical EDS and had very poor muscle tone, even my two children that have been doing dance to degree level, but after quite some time they are now building up some good tone finally!!!

One of my boys had a TTT a month back and it picked up on OH but not POTS, but he does get Tachycardia a lot of the time, just not always it would seem!!

I found I had the symptoms you describe when my BP was supper high so might the symptoms you had be a symptom of very high BP and possibly not an allergic reaction per sa, I wander if your reaction to the Lorsartan was in fact a clue to what might be going on in your body?!! Does that make sense?!! I keep asking my children's Dr.'s to try and explain to me why a med might be causing weird reactions in my children I am sure that they way my children responed to certain med's must be some sort of indication as to what is going on, but it all seems to fall onto deaf ears where our DR.'s are concerned!! Issie is your renin level low as well?! I was just reading up on Lorsartan then I came across this http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2265.2007.02898.x/full) article about low renin hypertension. To be honest this has got me thinking again!!! I had Dr.s note down bouts of very high BP in my early to mid twenties! but as I moved about for work it was not really picked up on until my late thirties! I really do not think my hypertension it is just down to essential hypertension.

I have been constantly spaced since I can remember. I can remember sitting in class at junior school (7/8) feeling like I was not in my body and trying to see the words on the board, but the actual dizziness that causes my vision to really fuzz up that make me feel sick I only get periodically. My one son was a major dizzy space head for a number of years Dr. put it down to ANS stuff, but it was making doing anything quite difficult. After trying one thing and another we found specialist tinted lens glasses worked well to reduce the dizziness. My son has high functioning Autism and we had heard about this therapy, so thought we would give it a go, he found instant relief when they found the right colour and contrast for him, now he uses the glasses when he is very symptomatic and finds he can concentrate as well!! All 3 of my children have found that the tints help reduce the fuzzy head thing, all my children are diagnosed with Dyspraxia but we think the dyspraxia is an ANS dysfunction symptom as it waxes and wanes with their autonomic symptoms!!

My chest pain and SOB was there at sitting as well but on thinking about it it was relieved some if my legs were elevated, (not just lying flat) even without Meds!!

Wow Elegiamore, that is so scary, actually I am not sure which is more frighting for you the actual medical event or the way you have been brushed off by the ER Dr. I had many Angina type episodes (nothing as horrid as yours) my then GP thought I was nuts!! but as my BP was so high he tried me on a calcium channel blocker Amlodipine Vasospastic angina Amlodipine has been demonstrated to block constriction and restore blood flow in coronary arteries and arterioles in response to calcium, potassium epinephrine, serotonin, and thromboxane A2 analog in experimental animal models and in human coronary vessels in vitro. This inhibition of coronary spasm is responsible for the effectiveness of amlodipine in vasospastic (Prinzmetal's or variant) angina.(http://en.wikipedia.org/wiki/Amlodipine) It is so odd that I have not had these episodes since being on Amlodipine!!! Have you tried this med before? You would have to be careful with it I guess if you do have MAST Cell stuff going on, as it is not well tolerated by some people.

This links to an easy to understand article on LDN:- http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/777 (from a UK, MS research group)

Ha ha LOL Me thinks me should get out more!!

My children and I tend to get (elephant on chest) and stupid multiple runs of eptopic beats (http://www.patient.co.uk/doctor/Extrasystoles.htm) when we have picked up a bug! And when it goes on and on we feel like yuk!! One cadio caught a 30 min run on my daughters TTT, she had, had SOB since getting up that day. I am sure it was the PAC's giving her SOB, cardio did say to get the PAC's checked out, but daughters Paed. cardio was not interested in it.

I bought Magnesium oil (by Better You) for one of my boys, it is odd stuff but for folk that can not tolerate the tablets you could try this as it is transdermal.

I wish I had found that article some years back! It does seem plausible that there might be a hiccup some where along the line that interrupts the endothelial cell function. Oh well more reading!!!