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Ehlers-Danlos Support UK
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I'm new and have a question

Hi my cardiologist thinks I have ehler danlos type 3. I've got an appointment at the end of Jan to confirm but has anyone here have problems with PSVT and tachycardia that isn't POTS?

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still a lot to discover, too many consultants concentrating on the smaller and smaller things of life , not on the connective tissue, your consultant is probably in the dark too. I am fighting to have 4 prolapses dealt with.

this is a awkward problem

yours in hope

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yes...I can relate. I have EDS and find the dysautonomia to be one of the most disabling symptoms. My cardiologist was very knowledgeable / helpful. EDS is a dysregular immune problem (versus autoimmune). In dysregular immunity- there are often "triggers", stress etc. The dysautonomia can cause PSVT-paroxysmal SVT's (sporadic and without warning) tachycardia. If the SVT's are related to posture (...it is considered POTS, Postural orthostatic tachycardia syndrome). I have that (and other forms of PSVT). My HR was most normal inverted. I sometimes am tachycardic with eating-Postprandial hypotension, and then SVT ensued. I was put on a Beta blocker-very helpful. Identifying the trigger is obvious helpful, but sometimes never identified. You may want to research dysautonomia as POTS and your PSVT's are due to dysregular autonomic functioning. I just had shoulder surgery- tore all of my rotator cuff tendons. They tore completely from the bone and retracted. -Cumulative trauma, or cumulative use of my shoulder for life functions. The wonderful world of abnormal collagen. Dysautonomia can also cause GI malabsorption, "leaky gut". IBS and GERD are due to dysautonomia in EDS (all types of EDS) Good Luck-hang in there! JA

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Thankyou that explains so very much! I have heart issues, GI issues and joints that pop crack crunch and come out of place so I have to pop them back in by bending or twisting the joint. I haven't had anything completely dislocate yet. Is that what others experience with EDS? Also I don't know if it's related but I have very visible blood vessels that are also fragile as they collapse every time someone tries to get blood.

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I can sublux all of my joints, and have torn various ligaments with injuries devoid of excessive force. I did tear all of me RTC tendons in right shoulder, as that joint completely dislocated from throwing a tote bag into the back seat of my car- my humeral head went with it. Had surgery 3 weeks ago- and am very cautious, as is my surgeon. Finding the right physician is everything. As far as your vascular issues, did you have genetic testing to rule out the vascular form of EDS? Vascular form of EDS is the most serious. I have very prominent veins, but lack the fragility that you seem to have. Genetics can test for the vascular form of EDS- but genetic testing can not test for many other EDS forms. If you have the vascular form of EDS then at least you can be monitored more closely, and placed on meds if needed to control BP. (prevent rupture of vascular aneurysm or other rupture from fragile vascular state. Do you get echocardiograms?

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Is a subluxation when they come slightly out of joint and you have to twist or bend to pop them back in with a little crack noise? I haven't had genetic testing yet, I'm waiting to see a dr at addenbrooks uk who's supposed to be an expert on EDS at the end of January. Cos of my recent heart issues I've had an echocardiogram they showed arrythmia but no Atrial fibrillation or valve problems.

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Hi Minx & welcome. I am new here as well. I have POTS as well - apparently common with EDS. I have an appointment with my doctor to be tested for EDS, but from what I have read here & other places & in discussions with others in this community, I wouldn't be the least bit surprised if I test positive.

A suggestion that helps with the blood vessels collapsing when blood is taken or an IV in inserted - refuse tourniquets or inflated blood pressure cuffs. My veins blew every time those things were used, leading to my being stuck at least 3-4 each time I went in. Because our veins are close to the surface, they can't take the pressure. If you decide to try this, be firm with the medical staff as most of them will fight you on it. But it is so very worth it to not have tourniquets or bp cuffs used - no more blown veins, not nearly as painful, no more knots that last for days & weeks.

I hope that helps you some.

sbncmo

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I too have tachycardia incidents Jill but Drs aren't near finding out what's what. My left hip subluxes and I've three rotator cuff tears. My right shoulder is agony right now. Hundreds of food and drug allergies too with the gut problem.

Minx88 I understand your plight and hope you get answers soon.

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It's fortunate you have been referred to see a specialist so soon as not everyone does depending on where you live and how supportive your GP is. I guess down to funding too.

I also have frequent subluxation especially ribs collar bones and full dislocations of left shoulder plus other weak joints......very much affected by hormones and awful when on mire name coil so thankfully free of that. Do you also find you have more loose times or stretchy times when you seem to sublux more in your cycle? Weird mine is around ovulation! I also overheat more then.

I have finally been diagnosed with SVT after years of describing the symptoms but fobbed off with it must be panic attacks! Thankfully a great paramedic caught my most severe attack on ECG and rushed me to hospital with it not fading at all but actually increased HR of 144 by the time I was rushed into Resus in A&E my HR was 222 so major scary. Worryingly the usual standard meds made it worse and I passed out stopping breathing so it was an interesting experience trying to find the best meds for me. They have helped to reduce severity but not frequency.

I'm still having episodes daily and even nightly not doing anything... so weird!

It's worse when stressed or rushing or tired and very strange after eating and even going to the toilet!

My cardiologist physiologist is awesome and wants me to have an ablation but my awkward body is allergic to the dye they use under procedure and local anaesthetic does nothing so they have to do it under general anaesthetic but his boss is so reluctant with my EDS that he wants proof of more episodes before they schedule surgery grrrrrr so how come my awkward body doesn't do it when wearing 24-72 hour monitor!!???

So he explained that as I have lived with SVT since birth I probably just ignore it or go on regardless unless it's major increase in HR but I find it floors me wipes me out and is noticeable daily even on higher meds so I have to prove it all over again.

My cardiologist suspects that I have multiple pathways through the 4 chambers in my heart as it's more likely with EDS apparently and since the meds are not stopping the episodes and it's so erratic when in hospital for usual treatment he says I must have the less common issues plus with repeated ECG results it shows other things he has seen before down to EDS patients with similar issues but with vascular diagnosis!

Yet my GP has had 3 referrals returning with nobody in North of UK taking on new cases unless it's already proven as vascular but no specialists are available to confirm! Duh! So fighting CCG NHS trust to get somewhere. Otherwise looks like a London trip will be only option but I can't travel that far on my own and can't afford it either or cost to stay there at least overnight possibly more especially if case of testing or something so hopefully I can claim travel/hotel costs.

Obviously like you I want to get vascular ruled out but no idea how! I also have blood vessels visible in my eyes and arms and hands and legs. My veins always collapse and halfway through attempts at taking blood it tissues and closes and even 10 minutes after putting in a new canula site! I always bruising easily and if having multiple attempts at canulas and bloods I look black blue purple and green after a session let alone a hospital stay! I get burst blood vessels constantly in my eyes which show more as they are such blue grey thin sclera down to the faulty collagen and my left squint lazy eye makes it even more obvious. Apparently my mum was told my eyes didn't do as normal when as a baby I had corrective eye surgery and they are awkward with the muscles being too stretchy! That was 40 years ago so fascinating! Opticians are fascinated too and say classic EDS eyes as apparently over stretchy they see in testing don't cope well even have 1 shortsighted 1 longsighted! Curious to hear if anyone else has similar?

The other annoying thing is I was also told I have classic POTS but this has been pretty much ignored as apparently it could all be down to the SVT .... yet it's different as it's when I stand up or turn or bend or spin and it's so different to the arrhythmia and flutters. It feels more dizzy and disorientated and kind of lightheaded or woozy but with SVT it's tight chested painful firm strong crushing and acutely focused on throbbing heart whooshing in ears and increasing HR where nothing helps...... but the Pots is helped with sitting back down slowly and breathing carefully and no motion or action just stability.

I'm just hoping that after the heart surgery it will help everything else including pots but probably wishful thinking :-)

Sorry for the essay .....hope things move along for you this month with your appointment and you get some better insight too. X

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Yep I have tacicardia that's isn't related to pots

That's what my doc said though never been tested for pots

Yet

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