Hi! I know this is a lupus group, but there seems to be a wide variety of knowledge on health problems here, so I am hoping someone might be able to help me with a more dysautonomia based question. I have been told I have dysautonomia, but the exact kind and the reason behind it is unknown. I’ve been told possibly POTS, but don’t fit the diagnostic criteria. I have been testing my heart rate again lately to see what it is doing when I do things like go from sitting to standing. I tested today, and while sitting it was 51 bpm. After standing, it elevated to 100 bpm. I immediately sat back down after standing, and 45 seconds later it was at 54 bpm. I tested again without filming, and it went from 103 bpm standing to 58 bpm while still standing in 15 seconds. Is a drop that fast normal? It sure doesn’t feel great and I think adds to my fatigue. I took a video. Would this be worth discussing with my primary care doctor, and are there autoimmune conditions that could cause something like this? I am 25 and heart rate can go as low as 32. Cardiologist I saw seemed to have little concern, but my heart rate feels off and I’m wondering if the information could be helpful. Thanks!
Dysautonomia : Hi! I know this is a lupus group... - LUPUS UK
Dysautonomia
I have Chronic Dysautonomia, in the form of Sinus Node Reentrant Tachycardia Syndrome , which is similar to P.O.T.S but has a genetic cause. It is made worse by Ehlers Danlos Syndrome which effects the strength of my veins and circulation.I had to do a lot of research into Dysautonomia because there is very little knowledge in the medical community about it , even Cardiologists overlook it or miss it in diagnosis , but its effects can be disabling.
I think I could help you with some advice about what to do next but it would be helpful if you could give me some more information, as your medical history can effect what type of care you need.
Are you having other symptoms as well as tachycardia and Fatigue , such as dizziness , fainting , migraine , muscle weakness , swings in temperature, sweating , feelings of anxiety for no obvious cause, palpitations, chest pain, nerve tingling or numbness , blood pooling in your feet when you stand up , breathlessness , insomnia and digestive problems or sleeping after food, difficulty doing any physical activity?
Do you have any other Chronic Health Problems , either Physical or Mental long term illnesses or syndromes?
Sometimes , dysautonomia ( autonomic nervous system dysfunction ) is linked to or made worse by another illness you have and often changes in care for that can reduce the dysautonomia without need for other treatment.
Some people even suffer with Acute dysautonomia after having a severe infection or trauma which caused the imbalance , and it lasts until the body has finished healing. Have you had any infections , surgery or trauma that could have caused autonomic symptoms?
How long have you been experiencing this problem?
Was that why you were sent to the Cardiologist or have you also got other Cardiac problems?
Are you on any medications , and have you found the symptoms got worse after starting any medication or supplement?
Have you recently stopped a strong medication like steroids or beta blockers or long term antibiotics / antivirals which may have effected a change to your cardiac or adrenal function?
Have you had recent blood tests to rule out other problems , or spot deficiencies that could be making the Dysautonomia worse?
Include , full blood count , liver and kidney function tests, vitamin B 12, Ferritin/ Iron , Folates, Vitamin D , Diabetes , Calcium and Thyroid Panel.
What were the results if you have them.
If you haven't , requesting these tests from the GP to give you a baseline of results or rule out other problems is very useful. You can ask to have these tests done at your surgery.
The fact that you have been testing your heart rate and creating evidence of it is vital so what you have been doing is very good. It is also important to write down your blood pressure results as well when you test yourself , not just the heart rate, as some people have dysautonomia diagnosed because of swings in blood pressure , or because they have normal blood pressure with a rising heart rate and the combination of results can help doctors specify which dysautonomia issue you have.
Remind Doctors and nurses to note your heart rate as well as your blood pressure at appointments as lack of knowledge about dysautonomia means that they usually neglect to include your heart rate in your notes.
When you have given me a bit more info , I will give you some tips on how to do a " poor man's tilt table test " which gives the best evidence of what is happening. Getting a Holter test and what self care or medication options you might be able to ask about.
The right evidence provided to your Cardiologist can get you properly assessed with a tilt table test .
Hope I can help , Bee
wow - You know a ton about dysautonomia. We should notes. There are more people here with it than we know and you could be of great help.
Do you have autoimmune disease? You mentioned a genetic cause. I guess there are many causes, right? I think Covid may actually be causing problems with autonomic dysfunction.
Do you have trouble with heat and humidity? That is my biggest challenge. It really gets me down.
Thanks for advocating on the part of people with dysautonomia. It is often overlooked here in the US too.
Xx K
Hi! Your post is so wonderfully detailed, thank you! I am going to break it down and answer your questions for me. In response to your first question regarding symptoms: I am experiencing fatigue, headaches (I used to have constant migraines as a teenager), muscle weakness and muscle fatigue, swings in temperature (all the time!), excessive sweating, feelings of anxiety (no obvious cause), nerve tingling and numbness, insomnia, chest pressure, and experience nerve, joint, and stomach pain after eating. Physical activity is exhausting for me, but I can do it. I usually feel a lot of pain in my joints while doing physical activity and my nerves will start tingling and burning. These symptoms are much stronger than chest pain or pressure while being physically active, although that can happen too. I do experience blood pooling but that is more when I am sitting rather than standing. I don’t faint, and haven’t experienced too much dizziness lately, but used to get dizzy pretty often and would have black spots swim before my eyes. If I am overheated those symptoms will return. Heat and humidity also cause headaches and nausea. As for all the blood tests you asked about, yes, they have all been done. I will need to double check on liver and kidney function tests though. I wore a holter monitor for 4 weeks straight earlier this year. Despite lots of slow heart rates and spikes of 30 to 70 bpm after standing, the cardiologist wasn’t concerned. I also passed the stress test, even though I was in an extreme amount of pain for quite awhile after and felt sick. I think my heart rate just drops too fast (actually scarily fast) after spiking in order to qualify for POTS. I know I have something dysautonomia going on but unsure where to turn. As for blood pressure is there an at home machine brand you would recommend? I was testing it consistently at home but I feel my machine may be inaccurate. If it is accurate, my bp will go hypotensive while sitting or laying down, and come back up into normal range when I stand.
BrooklyneDeanne - Blearyeyed did a great job of covering dysautonomia and its various presentations. To answer your question, yes, autoimmune disease can damage the autonomic nerves and lead to the condition dysautonomia. Because the autonomic system is so complex, people can be affected differently- rapid heart rate when standing, slower heart rate when standing, blood pressure drops, sweating abnormalities. It is always difficult to know the exact cause. If a person has autoimmune disease the diagnosis may be dysautonomia presumed autoimmune related. Auto-antibodies can give clues as there seems to be associations with certain ones.
Hope that helps. I have mixed cardio inhibitory (something like that😅) dysautonomia and happy to answer any questions.
Xx Kay
This helps a lot! Thank you! I have made notes =)
Hi BD
My cardiologist dx'd me with dysautonomia at the beginning of this year and I've also recently been dx'd with Ehlers-Danlos syndrome. The two often go hand in hand, but Blearyeyed is an expert on this. so I'll leave it for her to explain! Thanks BE 😘
However, my tilt table test was 'normal' in that my BP remained steady during the tilt (ie I don't have POTS). Although a few minutes post-test, I collapsed into full body shaking, sweating, felt dreadful. The medic looked quite shocked! This has happened to me quite a number of times before and after the tilt table test. The worst episode followed a recent knee replacement op when my body temp dropped dramatically along with my BP and stayed there for several hours. My blood sodium also dropped and I was put on a saline drip.
This is my version of dysautonomia, there does seem to be several types - a syndrome in fact!
Take care, xxx
You can have P.O.T.S when you have a normal BP , or slight drop in B.P, but your heart rate rises by 30 BPM in the standing position in 1 minute , and drops by the same when tilted to the lying position in 1 minute. You can also have P.O.T.S if your heart rate doesn't rise the 30bpm in a minute , but it instantly rises over 100bpm and stays over 100bpm consistently for a ten minute period. The drop in heart rate on sitting again usually still happens with a big quick drop.
This can happen for people who have a high heart rate even when seated. I know when my symptoms weren't managed my heart rate was often over 90bpm lying down.
What was your heart change when you did it or didn't they tell you?
Unfortunately, the testers even seem to get the tests for P.O.T.S mixed up too often too. The swings in BP rather than heart rate is Orthostatic Hypertension or Hypotension which happens in about 20% of P.O.T.S cases , you can also have a type of dysautonomia which can cause you to swing between hyper and hypo tension on movement ( sorry , the name escapes me at the moment).
Sodium level changes can cause acute P.O.T.S like symptoms , and can be part of P.O.T.S as a condition. Increasing sodium intake as well as water is part of the self care regime to try to control it.
Which type of Dysautonomia did your Cardiologist finally decide upon?
It must have been a relief to get it diagnosed , I know it was for me.
They didn’t comment on my heart rate during the tilt, so I guess they must have been ok with it. My sitting heart rate is usually 65-70ish, as I was very fit when younger.
The cardio didn’t comment on the type of dysautonomia but he did recommend keeping well hydrated and sufficient salt intake. I have mild diastolic dysfunction with some aortic enlargement. I had violent, and I don’t use the word lightly, ectopic beats which resonated throughout my body when EDS started to kick in, about 15y ago. At least I’m now blaming EDS!!! They don’t affect me so much now with my current medication.
And I do suffer badly with heat and humidity In fact any temperature change makes me feel awful I think it’s change in temperature that causes the problem rather than heat per se
Thanks for replying. I hope you’re doing as well as possible 🤗🤗🤗🤗🤗
Hi! I honestly don’t know if I would qualify for POTS or not. We know my dysautonomia is cardiac, but not much beyond that. Sitting my heart rate is usually quite slow. It can be as low as 32, but average is probably about 50. It’s commonly in the low to mid 40s. When I stand it usually elevates 30 to 70 bpm, but rarely stays elevated for longer than 15 to 20 seconds before it begins dropping rapidly again. It will start dropping whether I remain standing or if I sit back down. The rate at which it drops is concerning, and my primary care doctor told me today that it isn’t right. Unfortunately the sudden drop seems to be the one thing that is keeping me from a POTS diagnosis, and I’m not sure which other forms of dysautonomia to explore.
Hi
As Kay says, the autonomic nervous system is extremely complex and because of this the clinical outcomes can vary greatly too.
I certainly feel awful when my BP (and presumably my heart rate?) drops, so I know how scary this can be. I have had times when my pulse was undetectable taken at the wrist. POTS seems to be more understood than other dysautonomia outcomes and I would ask your GP to refer you to a cardio with an interest in this.
At the route of my version of DA, seems to be an over-reaction to perceived, or real, physical or emotional stress - very difficult to convey this to your average Dr, eh!! Mind you, my cardio was suprised that my BP and the rest are affected for such long periods (several hours after my knee op). I do get dizzy/feint feeling which last for minutes rather than hours too.
All in all its just sooo complex! I would certainly ask your GP for referral to another cardio, or maybe a syncope clinic.
Take care - I'm happy to answer and questions, xxx
Similar to me, Meg. The poor man’s tilt table was fine even on a hot day with the a/c broken in doctor’s office. Years later when I had the tilt table test, I was doing absolutely and then suddenly, like you nausea, sweating, felt like life or death, and they couldn’t put the table down until they got my blood pressure. Isn’t that the worst feeling? There is a reason they try to spare us this test.
So many of us with dysautonomia on the forum. It is not easy to cope with, that is for sure. I think taking my portable fan in a hot court house got me off jury duty, though. 😅
How are you doing?
Xx Kay
Hi Kay
Good to hear from you 😘
Would you believe (I think you would!) I'm coping better now that I have a firm dx of EDS, and several of the nasties that go with it. I always said I could cope, if only I knew what I was coping with!!
Actually, I'm currently nursing a fractured left wrist and thumb 🙄. I was stretching to clean the top of a door after the builders had gone, lost balance and used my left leg for support, which gave way - and I seem to have landed on my thumb or there abouts 😬😬😬. The replacement op on my left knee didn't really work, maybes because EDS has caused the connective tissues/muscles to be particularly weak on that side. Just hope my right side doesn't join the party any time soon!
EDS is the gift that keeps on giving 😂🤣😂🤣😂🤣. A bit like AI syndromes, eh!!
Anyway, how are you these days, lovely lady?
Take care, 🤗🤗🤗
Oh, so sorry about that fracture, Meg. And that is just one way you can cope better when when you know what’s wrong, right? You are probably prone to many bone and muscles issues. It’s the same for doctors. If they don’t know what’s wrong, how can they help?!
I’m doing well at the moment. Heat and humidity is the worst problem from the dysautonomia. Do you suffer from that? I don’t walk to the left of my building because steamy heat blows out from a laundry room. 😅
I am waiting for a funky brain MRI result to be re-checked. Looks like it may be nothing but has caused some anxiety. 😵💫
Keep in touch!
Xx Kay
I have Sjogrens, similar to Lupus. I also have POTS. If you check the pots UK website it shows how to test. The criteria is more than 30 beats per minute within 30 seconds from sit to stand which yours seem to fit but not sure what cardiologists think of heart rates under 109 bpm. There's lots of info on that website and I think there is a dysautonomia project. As Bleary-eyed said it's very hard to get a diagnosis as they don't know much & only a few specialists.
I had blood taken again today to test for Lupus and Sjogerens (again). My heart rate spikes quickly after standing, but doesn’t stay up. It starts dropping very rapidly.
You have a lot of symptoms! I would ask your doctor about getting a tilt table test. I think that is one of the most sensitive tests. It’s not fun, but it sounds like it is time to get a specific diagnosis. A cardiologist will interpret the findings. As Blearyeyed said, even in POTS there is variability. My heart goes down, not up. I don’t have have POTS.
There is a sweat test too, I think. Maybe you could try to see an autonomic specialist. That would help. This is sort of a new field, so doctors aren’t always familiar with it.
Best of luck and glad you posted!
Xx Kay
Thank you!! I see my primary doctor again in a couple of weeks so I will ask her about these tests and options then =)
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