Serbo

Thanks Serbo,

Can you tell me what an EP is. Is it Endocrine....?

When i get get chest pain it can travel down my arm and sometimes it is only in my arm.

Need to do some research on EDS as it has only just been suggested by new doc but i knew i have always been hypermobile - not sure if they are same thing.

Did you try any meds for the tachy before the ablation?

EP - Electro-physiologist, They specialise in the heart rythym, as opposed to a generalist cardiologist.

Yes was on a beat blocker called Sotalol and asprin, and tried a beta blocker called Bizopralol, but that one gave me chest pain and nasty side effects.

I had chest pain and dizziness before the ablation. Dizzyness was just put down to being on beta blockers, but in reality it may have been the onset of pots. I had never fainted though, just was always dizzy prior to ablation.

I live in London so had the ablation there. Had to have the ablation as was going in to funny rhythms every time i exercised (no chest pain at the same time though), so quality of life was poor.

After the ablation was very ill, and finally after about 9 months got a POTS/EDS diagnosis. Not sure if i would have got POTS so full on if i handnt had the ablation, but i needed it. Ablation's have been the trigger for a few on here with POTS, normally ablations for ANVRT but there are others who got POTS after other types of ablation.

The Doc's don't really know why it happens, but with certain arythmia's the ablation can make pots worse. Apparently this is more so the case in those with EDS. That is only anecdotal, i haven't seen a paper or study on it.

Not happy not knowing what it is, but i know what makes it worse - poor diet, standing still/quick changes in posture, stress so trying to limit this where possible. The pain has never spread to arms or jaw as true angina would, and is generally short and sharp or short lived.

Re- Muscular pain and EDS, have been told with EDS we are subject to something called Amplification, whereby we feel pain much worse than non EDSers, so a pain in our chest cavity would be felt a great deal.

You probably already know about it but there's a forum, think it's called ukhypermobility forum with some good information on there, might be worth checking the site out to see if you can find a good Cardio's details. sounds like you need a good EP with an understanding of POTS to do some tests and put your mind @ rest.

diagnosed with central diabetes insipidus prior to pots diagnosis, pituatry MRI normal in my case. Sorry to hear they delayed your result.

Hi Nina

Great post.

I will have to watch out for potatoes or keep them as a treat. I'm not fully Paleo yet (eating gluten/wheat free bread), but even so lost a stone in about 6 weeks without really increasing activity. Well within my BMI so don't want to lose much more. The almond pizza base sounds amazing. Have been using wheat/gluten free pizza bases but i suspect they are packed with preservatives and veggie oil so they can't be that good for you.

Off to sign up to Marks daily apple now, and to look for some recipes for a Paleo based cookie. There must be some Paelo safe sweet treats out there!

Aron

I'm not one of those who follows cordain, rob wolfe, paleo hacks, etc ... Although I enjoy reading their info. I ended up paleo a few years ago because I didn't feel energized from grains or legumes.

The problem for me could be the carbs since I have hyperinsulinemia. I need meat protein.

I eat potatoes on occasion but normally just what's considered paleo.

Why do you think it's impractical ? It's a pain but easy to understand.

Impractical in the sense of food prep. Makes you realise how much of a convenience wheat is in the way it's so easy to grab a sandwich. Bit harder on Paleo as most "complex" carb sources need to be cooked. Sweet potatoes, Yams etc.

I thought Potatoes were considered Paelo? Or is it just sweet Potatoes that are. I feel mega light headed and energyless when skipping carbs, so i cant get in to the low carb side of it.

I have started listening to Rob Wolf's podcasts and will probably buy his book. Seems like a well rounded good way of eating.

i failed the lying down stress test, had to stop because of chest pain, Doctor thought it was muscular pain, but i'm not sure.

I dont really know of a specialist in London, best to ask the Prof. I had my ablation done under the EP's at Barts/London Bridge Hospital. They are good but not sure how familiar they are with POTS. SJ mentioned an EP in Bristol who she had met and was familiar with POTS:

WWW.wholehealth.me/jcpittscrick.html

Hi Dizzy, out of interest how strict are you on the Paleo? I find it a great help, but it's impractical to stick to completely i find.

Hi - Have had similar sort of thing in the past, i'm a guy so used to get chest discomfort some times just standing up shaving. TBH I think the tests would put your mind at rest and give you an idea of whats going on.

Have had chest pain with tacky before when i had averse reaction to beta blockers. it's not nice, so sorry that you've got it all going on at once.

Pain is so subjective it's hard to compare i guess. With the EDS for example, all my cartilage in my chest clicks, that feels like a pressure, and i literally have to move to click it to stop the pain some times.

Is it chest pain literally every time you try and exercise? Or get to a certain level of activity, if you havent done one maybe get a stress test done, or a stress echo. I understand MVA is under a diagnosis of exclusion.

Not really sure what's going on with me, can walk for up to 3 hours of some days and no pain, stress seems to bring it on though.

Had 1 CBT appointment, discharged within 30 mins, my physical symptoms were POTS not anxiety

Hi Emma,

http://www.gastroenterologycentre.co.uk/qasim_aziz.php

Broke up with my other half of 4 years to POTS. Had arythmia's for the last 2 years which changed me as a person, and then POTS after the op' to fix the arrhythmia. Other half couldn't take it, Docs not knowing whats wrong, not being able to go out, get drunk, go on holiday etc...

In my case probably a reflection on the state of the relationship, but felt relieved when it ended. No more stress of trying to hold on to something while everything else was falling down. My health overall has been better since this element of stress has been removed.

Now to focus on rebuilding the rest of my life!

I read an article an article on dating with POTS somewhere, interesting reading! Not there yet, but looking forward to giving it a go.

thanks corina, i was confused about which end of the bed to elevate, as when we talk about the head of the bed i presume we are referring to the end where your feet are?

thanks for your post Issie. How do you maintain NO?

I saw a Professor today here in the UK who's just got a grant to look at the link between non cardiac chest pain and true chest pain, e.g gerd making angina worse.

being a new POTS patient, when we talk about tilting the bed (as my dr recommended), is that putting blocks at the feet end of the bed, so more blood gets to brain? What kind of degree should you tilt to.

thanks

Hi Emma

Thanks for the link, this is the article:

http://knol.google.com/k/noncardiac-chest-pain#

thinking of getting these:

http://www.wiggle.co.uk/2xu-mens-elite-compression-tights-ss11/

or these:

http://www.wiggle.co.uk/compressport-f-like-full-leg/

But it doesn't seem that the manufacturer can give a level of compression, Wiggle said - The more expensive the are, the more compression they give.

I just started wearing Mediven sheer and soft when I feel I need the extra help. I ordered these online from Brightlife . They are a bit more expensive but have been good so far and actually seem to have given me more time on my feet. So far I have tried 15-20mmHg which probably isn't enough, and 20-30mmHg which is definitely better. I also started wearning sports compression pants for my walks which I purchased online from wiggle.co.uk. The compression from these is quite strong but really good. I can't wear them for too long though as once I stop exercising it makes me feel like I am having high blood pressure.

I find the mediven sizing really good for me and perfect for my small size and stature.

Hi Lotus

Please can you share with me the link to the sports compression pants you got from wiggle?

I am a guy, and was thinking about wearing these under a suit if thin enough. As it's winter now here in the uk I'm sure they could be worn under jeans. I wear compression stockings to the knee but wondering if these are better. i understand you can buy sports compression pants which are graded in compression like the stockings , which is what i'm after.

Thanks

Aron

this article was written by a harvard prof on causes of chest pain, not specific to EDS/POTS, but very good

Hi, sorry to bump this old thread.

I also have POTS and EDS III and get the chest pain bought on by stress. I wondered has anyone pursued the microvascular angina and had it confirmed? Cant see any studies linking EDS/POTS to it specifically/

Reassuring that to some extent that the Docs think this functional pain is not dangerous.

yes I have huge issues with this every night....only mine are almost full body jerks...its very unsettling...they happen many times through the night always waking me up....I hate them because my heart also feels weird when they happen almost like it stopped beating for a second or two and the jerk is to get my body started again. Wish I could figure out what causes it......

Bren

I get these to, same feeling, wondering if my heart has stopped.

I know most likely of course it hasn't. My Doctor says that these "jerks" if they can be called that, are caused by changes in BP. Low BP.

I notice if try and go to bed less stimulated e.g all lights off, no TV etc it helps

Just had a look at Dr Pitts crick's website by the way, seems like an interesting man and i like his philosophy. I may be spending some time in bristol soon so i think i shall go and see him

Good to hear your going to festivals, that must be a great feeling. funny you say about the music causing ectopics near the speakers/bass boxes. When i just had arrhythmia's not POTS i went to a drum and bass night with a fairly hefty sound system, i was by the front for a few hours and i could feel every vibration in my chest. probably a bit of hyper vigilance but amazing how much it can be noticed.

Glad things are going well for you and the citalopram is good at a lower dose. I certainly wouldn't rule it out.

I saw professor graham who is an EDS specialist in london. He examined me for about an hour. i think you score against a set criteria and the score defines what type of EDS you have. I have always been able to do things like click my knuckles, and over the last few years my sternum bone clicks, along with my spine and other joints. it doesn't hurt, just aware of it. suspect if you have EDS type 3 (most common) you would have some of these features. I was asked if i can touch my nose with my tongue which i thought was normal, but apparently not, also easy bruising, thin scars and things they look out for. the criteria seems quite wide, but the testing is fairly pleasant compared to tilt tests, exercise stress tests an ablation and so forth!

Thanks Julie, yes i had 1/4 of a 0.1mg pill, 0.025. The dosage confused me to, so i asked the dr to clarify. i only took an 8th of the recommended dosw 200 mcg.

Could be an anxiety thing, was unusual the way it hit me though, normally to tacky with flushing in seconds. Still awaiting dr's response, but i am tempted to try taking it again although i know this wouldn't be clever.

Sandy - I took a quarter of a hay fever pill a while ago, and ended up in hospital the next day. i couldn't stand up for long enough to use the toilet (am a guy ), make food etc, had a big relapse. Strangely i was never this sensitive to drugs until i started getting the POTS symptoms.

thanks Julie and Alyssa. Have not taken any today, and emailed my consultant waiting for response. the odd thing is other than the initial reaction, profuse sweating and small rash on my hand i felt better. noticed myself dancing yesterday! Good med, but perhaps my body can't tolerate it.