anna

Just a question for other EDS patients... do you have random and unexplained bruising? I do at times, especially in my thighs and calfs. I think that it's a blood vessel that bursts randomly, and I don't remember any injury that would cause the bruise. In fact, sometimes the day before the bruise develops, in the same spot, it will be very hot feeling and it itches like crazy, and scratching makes the itching much worse. Then, the next day, I'll have a hideous bruise in the same place as the burning and itching sensation. It's very firm to the touch, like a hemotoma, which is why I suspect a blood vessel has burst. Hello Ericka, Myself and my kids are diagnosed Classical EDS, we all get spontaneous bruising, I tend to have some bruises that come up in the same place over a number of years. The way you describe the bruise forming with a burning itchy feeling is what I get too! My GP suggested high dose vit C, be warned that buffered vit C. is better than non buffered sort as vit c can play havoc on your guts, I used high dose well coated vit c for a 3/4 months then got gut ulcers! Turns out my guts are a bit weak too!! Anna

Maxine I have just PMed you I hope you do not mined! Anna

Could the numb tongue be a continual migraine aura or something out in your neck?! Any chance you could see a GP or go to a drop in clinic if you can not face the hospital (which I can understand why you may not) I think you should get it noted down some where, just so you have an official record of any possible adverse reaction to a general anesthetic, in case you need an other at some time.

just wondering if anybody has any pointers or if this is a common dysautonomia thing? I feel like this when I have bradycardia my kids can get like this when they either have a lower than normal HR or when their HR is being very irregular. Have you noticed an change in your HR when you feel like this?

Ok well let's start by saying DO NOT GIVE UP please! My kids have a tentative POTS diagnosis but their Dr.s have not been able to put together all their weired and not so wonderful symptoms their Paediatrician has removed them from her case load explaining to them that see will be more than happy to see them if they have any thing that she can help them with!!!!! We rely on folk like you to battle on in hope that one day we will find reasons for my kids being like they are. Sorry to burden you like that, quite a tall order me thinks!!!! But I think we each slowly but surely chip away at this whole ANS stuff finding new leads here and there and hopefully one day some one will get it!!! I realise you do have quite a lot going on in your body, the high random temps could be auto immune type reactions, they could be endocrine in nature I have met other people on other boards with over heating issues, some have auto immune conditions so that might be a lead! My kids can have some very scary low temps, they tend to be worse when it is hot out, seems like their hypothalamus is out of sink with life. My kids have EDS and we are thinking maybe they have some sort of microvascular damage that is causing their odd responses to life. Re the sensitivity to these meds, I wander if it is linked to your random high temp's some form of over response going on! Have you ever had a endo look at your symptoms? My mum has very odd responses to most of the meds you mentioned, she was able to drink wine etc. up to her early thirties then not even a drop or she loses strength in all here muscles! Her GP still disbelieves my mum when she says even baby asprin makes her have odd symptoms mainly big drop in BP, she has high BP but has reacted badly to all the meds the GP tried with exception of a water med that she takes daily all the other meds made her BP rise or drop too way much!!! She can not go near any one with perfume on without flushing and having loads of weired symptoms, it is soo odd. On the other side of this was my dad whom had an very very odd response to all the stuff you mentioned, he had a massive tolerance to all these things, he could drink loads of alcohol and would still be standing when all around him were out cold, he would drink loads of small black Italian coffees no giters, pain meds did not work for him neither did sedatives, this was sadly proved when he had cancer and palliative care Dr. told us he had never in all his 40 year career ever seen any one need so much sedation as my dad and he admitted that it seemed pain meds did not work on him either, it transpires that this might have been because he had EDS and was in pain from a young age. Now down to the whole arousal thing I cannot help but think this is an response to adrenalin. I have essential Myoclonus (a form of muscle spasms) which my Dr.'s think is very much adrenaline fed, when I have sex I trigger a bad myoclonic episodes, I also flush for hours and my BP and HR are all over the place and most always I become presyncope, I thought that this was normal for us but looking around I do not think it is !!! The whole chemistry around inappropriate arousal I should think is very complex but I would hazard a guess that you are over responding to hormonal fluctuations, this might be an endocrine issue me thinks. Sorry I have waffled a bit but I hope you understand what I am on about! Please take care.

Hi Lauralulu, My kids are on slow release sodium tabs but they still have days when they get very dehydrated, they also have very over active bladders on these days! They have all found Gatorade is very helpful it seems to help keep fluid in, you can get it in all the main UK supermarkets. We have found that the kids get on with Gatorade better than others on the market because all my kids have problems with the artificial sweetener and colors in the other brands. Anna

Just read what I wrote the other day, (brain on stand by again, well it is most of the time I think!) Yes what I meant to say is; we have EDS2 described by our geneticist as the same as classical EDS but presenting in us, milder than in EDS1, my skin stretches a little more than the norm but I scar oddly, one of my boys skin is like Mr. Elastic as were my dad and my granddad. My daughter and other son's skin is like mine some stretch but their's is very very delicate. We are all hypermobile with most joints slipping and sliding to various degrees. We have been offered a chance to see a specialist EDS team whom might be able to type us with more accuracy, but I declined at the time as we had had enought of Dr.'s! Not sure I should have done that now!! Tonibunny RE who looks after EDSers in the UK, you might have guest it already but it's, no one!! Ok that is not completely true if you are lucky like some your GP will manage your care, the problems arise when you do not have a helpful GP. You could pop over to the UK EDS site, you can find some helpful stuff on there re who might be of help. Anna

It has been explained to us that the blood vessels in HEDS are more stretchy but not weak as in VEDS, so not a high chance of spontaneous rupture and such like. Though if you have any family history of VEDS type complications it would be wise to keep a check on it! We have been re typed as type 2 which is just a version mild classical, on our clinic letter the geneticist has written, "very intense exercise may put pressure on certain blood vessels and this should be avoided." So I guess we are a little more prone to going 'pop' than normal folk!! Anna

I do! also both arms, tongue, it always makes me wander if I have put my neck out and it has triggered a migraine as often, if I look up, full head up, I will get the visual snow, bad tinnitus, and then more often than not a migraine headache.

Hello Lindajoy, At one point in time our family GP was thinking we might have 'MEN 1' me and the kids due to all sorts going on, has your Endo talked to you about this condition at all?!! Still do not know if this is a possibility as GP has not sent us on to an Endo, so might have it but not now so much for continuity of care!!!!

"And I don't mean to be dramatic, but with EDS in the family, and 5 other relatives who have all had aneurysms or haemorrhages, including my uncle at 37, I just don't think anyone is taking this seriously enough." Oh my dear, I would try and push for a scan I realise you probably don't feel up to a fight but given the EDS and aneurysms etc. it would only seem reasonable that you are given a scan, are the Dr's a tad daft even more so given your history. I get migraines with aura's some of the neuro. stuff goes on for weeks, but over the last 3 years or so I have been getting bouts of migraines I'll get 2+ a day for a couple of week's, all with the visual snow, tinnitus, numbness in tongue, arms legs and now with blindness in one or both eyes that last from 10 min to well over an hour. I have a feeling it might be hormone linked! I have not found any migraine med help, but I do take a calcium channel blocker for my high BP, and have found if I do not take them I get even more migraines! Have you tried Cinnarizine, for the nausea? my kids were prescribed this for dizziness and nausea.

I was concerned about this med as it says not to be given to under 15's son is 15 in April but he is a thin thing does not weigh the amount he should be,to be given 10mg 3 times a day for a month to try and see how he gets on! GP prescribed this med, but it was a very nice locum GP that picked up on the possible gut transit problems and put son on Erythrimicine, but our own GP would not re prescribe this, said did not want resistant bugs etc. Son has had bad GI problems for a few years now he did go to see a gastroenterologist about a year ago, who did give my son some Domperidone and said he could try it if he wanted to!! but in same breath told us he was sure son's problems were down to stress and that he could not find any reason for my sons sever epigastric pain etc. after some blood and stool tests done, and told us that many children have stress related gut issues. So we did not use this med, but now I am thinking should we try this as we have it at home anyway! Or may be I should contact the gastro. guy and ask about using the Domperidone given the light of the 'new' diagnosis!! Anna

I think you might need to see a neurologist and get this looked into, it might just be nerve impingement, quick check should be helpful.

My Kids have been diagnosed with Classical Ehlers Danlos syndrome but they all have Maran features, one in particularly is tall thin long face long long fingers, arm ratio thing, all my children do the finger wrapping around wrist thing. One has Marfan feet and legs, mildly concaved chest, high arched pallet. We were told by our geneticist that many people with HCTD have an overlap of symptoms, so just to confuse you more you might want to look into EDS as well!!

Have you looked into E books I believe you can buy this gadget that you can download books on, my kids have Nintendo DS things you can now get books for those too!!! but the E books come in different sizes and you can change the font I think!

Hi I just put a post up about a med called Metoclopramide my sons GP has just prescribed this drug for my sons GI issues.

My sons GP has just prescribed this med to help reduce sons morning vomiting etc. was on Erythromycin(sp?) but Dr. does not want son building up antibiotic resistance. So have any of you good folk used this?

I answered 3 years that is for my kids as they have a diagnosis of 'ANS dysfunction probably POTS' that's the cardiologist wording not mine! I myself have had symptoms since I was a small child with beg flare ups in my early 20's then mid 30's now mid 40's have moderate symptoms all the time! But I do not have a diagnosis of ANS stuff only of EDS. I am on 2 meds for high swings in BP, poor circulation, arrhythmia etc. But this is all put down to me being over weight, and unfit though, I did start with these problems when I was young and a fit gymnast, but you know some Dr.'s will not listen!!! Anna

Ok sorry to be a pain but I have just been looking through some of my daughters old clinic notes to find that one of her old Dr.'s had written that D had evidence of supraventricular tachycardia with some beats originating from different parts of her upper chambers. At the moment my daughter has been causing the BP machine to read error most times we try to get a reading is this because of these odd beats?!!

My daughters arithmias often go on for hours they are somtimes irregular like she misses a beat or two and make her very symptomatic. Up until last week no one has caught the bad ones on tape only the odd flutters here and there, the normal stuff. With the ANS test she had last week she had constant eptopic beats for 40+ mins, but non of her missed beats this time. On tilting up they reduced some but increased again on being lowered, this seems to be a normal responce. It made for some interesting readings me thinks!! Now can some one put me straight is this eptopic beat stuff is this the same as the increase in BP she has when she is still too long the usual POTS BP or is it somthing else, sorry but I am very confused!! Anna

Yes I thought eptopic beats were common, but I still wander if they are relevant to our family, I know this may sound odd but can a body respond baddly to these eptopic beats!

Ok kids had some ANS tests last week, Dr. noted that daughter had many extra beats throughout the test, now on the last event monitor I had Dr. noted extra beats when I had an event! The Dr. doing kids tests asked if my daughter had had this looked into, which she has but Dr.'s concluded that it was a common finding and that many peps have this! Anyway I am wondering if these eptopic beats are clue to what is going on in our family! What do you guys know about eptopic beats going along with POTS symptoms. Anna

Hi Flop, Yes this Dr is doing a research study, looking into arterial resistance. I think the equipment he was using was probably the type Prof. M uses, but with a electronic cardiometer as a separate machine (smallish blue box thing). It is interesting to see that you had such a difference in your sitting and standing cardiac output wow, this Dr. told us that it was very unlikely that the kids CO would be lower than normal as they where having normal bioreflex responses no big dips in BP or highs in HR, but as the kids were only up 10 mins, had been starting to pool while lying down and they have very good muscle pump reflexes I wander!!! I would so like to get my hands on this new equipment you tried, sounds very interesting indeed. Any idea what this device is called, I would like to see if any clinic has invested in one, it might answer alot of questions we have!!

Hi Guys my kids had some testing today! a nice Dr. doing some testing on kids with a specific heart condition, thought my kids might benefit from his testing! My kids had a piece of equipment attached to them that calculated resistance of their Aortas, spine then tilted. Their results seem normal one of my kids had a low normal result, but other 2 where normal. I do not recall the details but 2 of my kids had a 30 point rise in HR but the one that had a low normal pulse something did not have the 30 point rise but the only stayed tilted for 10 mins so think they would all have had a bigger HR increase if up longer. Any way all my kids legs and arms went deep red while lying still then even more so when tilted. Nice Dr. did not really have an explanation as why this happened as my kids did not have much of a BP drop, and only a little rise in HR. One odd thing that happened was that the cardiac output machine did not work on all 3 of my kids but it worked fine on one of the DR.'s techies who had the wise idea to check it on herself, could this anomaly have something to do with my kids?! it is just soo odd Dr. said he has done 100 or so of these tests and this only happened twice before!! We should get some info back in the next few weeks so I might understand more of what is going on as Dr. said he needs to compare results with other subjects. Oh my daughters test did show up some major eptopic beats that Dr. said should be looked into some more.

Hello and welcome to the boards, My son started his meds yesterday has had diarrhea since starting tabs, but we will give it a few days to see if it settles. He is on 4 tabs a day for 2 weeks to start with! I hope your son finds this med helps him. Anna