Hey everyone! So I found out today that my palpitations, chest pain and shortness of breath all have a reason - I have ventricular ectopics. Not a massive big deal, more annoying than anything!
But just wondering if anyone else has these and can give me some info and also if it's at all related to Sjogrens??
17yo, Sj?gren's syndrome & pancreatic exocrine insuffiency & migraines, on plaquenil, Prozac, endep, levlen, nexium & naprosyn
I don't know much about the heart, but the cariologist should be able to tell you if he thinks this is autoimmune in origin. There are a few people on this site who have had their heart issues attributed to Sjogrens.
Also, I didn't look up some of your meds, but I am wondering if you are having replacement enzymes for the pancreatic insufficiency and if they did blood work to check for bit b12 levels. I was just checked for the pancreatic issues so I have researched this problem associated with Sjogrens. Just wondering how aggressively they are treating this condition. I don't see my GI doc for several weeks so don't know the total results.
Don't be afraid to pursue the Sjogrens angle regarding the heart as there can be issues related to neuropathy from the Sjogrens that affects the heart. Irish
Thanks so much Irish! I haven't been sent to a cardiology but I see my rheumy next week who will probably refer me as he's the only one on top of everything!
Strangely enough I had severely low B12 with no known cause before I was diagnosed with Sjogrens. But yes I am having replacement enzymes - I take creon 10,000U :) they've got a wait and see approach at the moment as all my scans were normal I just had reduced function.
Okay I will for sure, do you know much about neuropathy and Sjogrens? Still such a new world to me! Thank you so so much xx
I've had multiple Premature Ventricular Contractions (ectopics) since I was a kid, first noted after I had Rheumatic Fever, but possibly there since birth. RF is an autoimmune disease, and if it was the trigger for me, then I would think there is an AI link at least in my case.
Over the years, and new diagnoses, I've noticed my PVCs become more active (from a norm of 4-6 per minute to as many as 30, in a pattern of one normal beat, one ectopic, called bigeminy) when I am in the firstattack of a new disease process, or in a flare.
I'm mostly asymptomatic (or used to it, at this point it's hard to tell) unless the more frequent bursts coincide with periods of rapid heart rate, then I do have some of the symptoms you've mentioned.
I've never been treated for the PVCs specifically, but about 10 years ago I developed episodes of rapid heart rate (prolonged +150) and have been taking beta blocker for that, and the PVCs seem to respond. When my thyroid needs tweaking, one of the first symptoms is the palpitations.
hannahsutton.. kuddos to you at 17yo advocating for yourself.
Hindsight: I have had heart 'flutters' since adolescence. Naive, I now realize, I thought everyone had what I considered "quick heart re-sets'..lol.
Said to DH few years ago (in my very late 50's), "Aren't those heart flutters interesting.. like an internal tickle of sorts/" He look at me with a studied, incredulous stare and stated, " That is NOT normal." DH has cardio history.
I tend, as most people would, to feel more than the daytime 'flutter', at nighttime. When we are quiet, noise not present, we are more aware of ourselves.
Similar to you labs showed low Vit B's... (so I wonder how depleted are our foods today as rotation farming has been abandoned = soil depletion, plus loses of Vits and minerals in processing of foods, so I purchase very few processed foods.)
The recommended form of Vit B was sublingual and that is how the Dr. takes it herself.
I was also low in Vit D, low Vit D (actually a Hormone) prevents absorption of Calcium from food sources, and can affect electrolytes (imbalances can cause heart palpitations). The heart is one organ that requires a normal and stable concentration of calcium to function properly.
For myself I feel and get dehydrated often, so with SJS drinking water is important. And during, after a flare I find drinking electrolyte drinks help, incidentally with sometime to thwart headache onset.
*** Vit D is stored, accumulates in the fat and liver.. so it needs to be monitored.
When low in these, Dr. should prescribe therapeutic doses with labs to monitor that they are going up, then level to stabilize.
Sitting in sun and simply allowing bare legs to be exposed to sun for 10-15 mins allows for enough Vit D, at least in a non-deficient person. So during the summer I lower my supplement of Vit D3.
"Clinical impression and anecdotes often associate arrhythmias with consumption of caffeine, alcohol and tobacco, and caution against these "pleasures" has been widely practiced in managing patients with palpitation despite the relative lack of direct evidence." Caffeine is in a lot of drinks.
So some things to consider as you are young, and can talk to your Dr. about.
If you are curious and decide to search nutrition/vits/minerals, avoid agenda driven seller sites and go for reputable medical studies.
Add in the lack of digestive enzymes = malabsortion
I am from the heart sorry that you have Sjogren's. It does run along a spectrum as to how people are affected, there are so many variable, individual genetics, environment, etc.
Early Dx prognosis outcomes are showing best. Circumvent damage due to chronic inflammation.
This condition as with others, I believe can be an asset to who we become as people on many levels.