RichGotsPots Posted July 7, 2019 Report Share Posted July 7, 2019 Over the decade I have had Dysautonomias I have always had at least a 30 beats increase in my heart rate and I have never once seen a study about it. I have Sjogren’s Syndrome but it is believed I also have Mitochondrial Disease. Around 38% of Mito patients have an autoimmune disease so it is not that uncommon and over 60% have dysautonomia. If you look at MitoAction website they doctors talk how their Mito Patients react to infections and their dysautonomia symptoms. It is common for Mito Patients to have a Systematic Inflammatory Response to infections where their heart rate and blood pressure either increase or decrease. Also they talk about how dysautonomia impairs being able to get an accurate body temperature. I almost never have a high temperature even with my worst proven infections. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted July 7, 2019 Report Share Posted July 7, 2019 Mine does, but infection raises the HR in healthy people as well. B xxx Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 7, 2019 Author Report Share Posted July 7, 2019 I will probably do a follow up to see if people know how many beats it increases theirs on average. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted July 7, 2019 Report Share Posted July 7, 2019 Yes my HR increases and I usually get low BP with spikes. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted July 8, 2019 Report Share Posted July 8, 2019 So this explains why my heart rate has been really high even while laying down. I have white patches on the back of my throat(bacteria) and have had fever for the past few days. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 10, 2019 Author Report Share Posted July 10, 2019 Another thing that is not talked about as much as it should be is baseline temperature readings in various dysautonomias especially with autonomic neuropathy. I believe many of us have lower baseline temperatures and we do not present with high fevers when we should and infection diagnosis is being delayed. At least that happens with me and I have seen it discussed in other illnesses where they have dysautonomia. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 10, 2019 Report Share Posted July 10, 2019 Absolutely. My temp is 97.2 or even lower at baseline, and I feel extremely feverish and flushed at 99. But it's always dismissed as "normal" when I'm sick. Then how is 97.2 normal? Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted July 12, 2019 Report Share Posted July 12, 2019 On 7/10/2019 at 6:42 AM, RecipeForDisaster said: Absolutely. My temp is 97.2 or even lower at baseline, and I feel extremely feverish and flushed at 99. But it's always dismissed as "normal" when I'm sick. Then how is 97.2 normal? You mean 99 is being dismissed as normal? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 12, 2019 Report Share Posted July 12, 2019 Yep, I can be flushed and have an increased white count and tachycardia , but they won't consider that a fever. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted July 12, 2019 Report Share Posted July 12, 2019 I've been on antibiotics for a few days now from some type of bacterial infection. I can barely stay awake. I used to be able to work with the flu with outside conditions. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 13, 2019 Report Share Posted July 13, 2019 This is from the internet The normal human body temperature is often stated as 36.5–37.5 °C (97.7–99.5 °F). This article defines fever: https://www.bmj.com/rapid-response/2011/10/27/definition-fever Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 28, 2019 Author Report Share Posted July 28, 2019 I think that the Mitochondrial medical community is way ahead of the general Dysautonomia community in Dysautonomia research. Dysautonomia plays a major role in Mitochondrial Disease. It affect as much as 50% of patients even though there are over a hundred types of Mitochondrial disease. So they see a lot of patients with dysautonomia symptoms. Mito people also have a lot of immune problems both autoimmune and immune deficiency. The later causes them to get infections. So Mito doctors see their dysautonomia Mito Patients get infections and they see their responses to it. They also see their response to treatments. There is a lot to be learned from their Mito dysautonomia infection observations. For example they notice that because of dysautonomia their baseline body temperature is usually lower and also harder to read than general population. They also see that they get a SIRS which is Systemic Inflammatory Response Syndrome that among other things affects heart rate and blood pressure. They also use IVIG in many immune deficiency Mito patients with dysautonomia and they note that they need special care during infusions and usually recommend subcutaneous instead of IV style IG. After nearly a decade since I have been diagnosed with many Dysautonomias it is frustrating to see the best research for dysautonomia is coming from a small rare disease community like Mito and it is anecdotal in most cases. I know that the reason is because we still have a tremendous lack of awareness in the medical community about dysautonomia, who think it is a rare illness and nothing serious. It is took difficult, I guess, for these large Autonomic labs to observe things like infections in dysautonomia because people are not local to the clinics so if they end up in the hospital it’s local and not getting reported or handled by the clinics. A lot of Mito patients will move close to the clinics so maybe that accounts for the better observations. It is still frustration nonetheless because many dysautonomia patients symptoms start out from infections so you think by now there would be more research into that.. Quote Link to comment Share on other sites More sharing options...
POTSius Posted July 28, 2019 Report Share Posted July 28, 2019 When I am sick with a cold/flu I have noticed a considerable increase in my resting heart rate, as much as 20-30bpm I think it is mediated by withdrawal of the PNS (as opposed to via the SNS), as last time I was sick, and on a beta blocker, I still had the increased heart rate (If I remember right) Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 29, 2019 Report Share Posted July 29, 2019 My beta blocker doesn't cover the increased HR I get with any infection. I get a big increase in my resting and exertional HR despite it. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.