Bradycardia And Tremors?

[Jerry]

I'm new to this forum and new to the world of dysautonomia. I've had my symptoms for only four weeks. As I have looked around the web researching this, including here, I mostly see dysautonomia associated with rapid heart rates. The T in POTS. But I get slow heart beats, 50s and 40s every morning and often in the evening as well. Is this symptom consistent with dys as well? And more recently, I've started to get tremors, arms, legs, trunk. I haven't seen tremors on the dys lists, but it came around the same time. From what I've seen this all seems very vagal to me, because of the brady stuff, and the wide range of symptoms, digestive discomfort, etc.

Eating is also a trigger for me. I tend to get these symptoms after eating, especially after eating earlier in the day. This is all very confusing and terrible uncomfortable for me. Any thoughts?

[arizona girl]

Hi Jerry, Welcome to the forum. First, yes many of us get the symptoms you are describing. POTS is just one form of Dysautonomia, there are several forms and many of us have a combination of forms. If you've had a chance to read through the information on DINET's home page, there is a lot that may help you see where you fit.

In my case the some of the symptoms you are describing is called autonomic neuropathy, some of those symptoms can be triggered by standing, but some like GI distress can happen at any time. A lot of the research on autonomic neuropathy is pointing towards damage to the small fiber autonomic nerves, these nerves are also our pain and sensory nerves. They control everything that your body does without thinking. BP/HR, sweating, digestion, etc.

Many disease states can damage the small fiber nerves, some are treatable once identified, some are not. It has become easier now to test for this type of nerve damage, as a skin biopsy can now count the nerve density and there is a scale for what is normal and what is not. It can be patchy and develop slowly, so a repeat may need to be done along with qsrt and thermo testing.

Do you know what is happening with your blood pressure when supine and standing, or is only your HR going up when you stand. It is helpful to track when you are symptomatic and what position you are in.

I also get very low and very high HR and BP. I turned out to have the SF autonomic neuropathy and eventually found out I had 3 autoimmune diseases and a primary immune deficiency. I have had improvements and have stopped some of the progression, by treating those conditions.

With the tremors involved that adds another layer, if the muscles get involved those are large fiber nerves and that can point to other types of neurological causes and diseases.

My primary treating physician is a neurologist who specializes in autoimmune neuromuscular disease. If you aren't seeing one it may be time to find one in your area. The members here can help you find someone in your area, but you may have to travel as there are not as many that are this specializes in the USA. There is also a physician list on DINET's homepage.

Take care!

[SeattlePotsy]

I have POTS and have tremors and non epileptic seizures as one of my primary symptoms. I also get GI issues, vomiting etc. I try to eat smaller meals more frequently as I have noticed symptoms following meals as well. Fluids, relaxation/diaphragmatic breathing, and sometimes oral IM or IV Benadryl seen to help me.

[E Soskis]

I have AAG - autoimmune origins of dysautonomia - my heart rate drops suddenly and I have a pacemaker to keep me from passing out when the rate drops - hope your MD is considering autoimmune as a possible option for diagnosis.

[Jerry]

Thanks, Arizona Girl. My issues don't seem to be triggered by standing up. It mostly happens when I'm sitting, though I do get some relief from laying down. But I can get this brady-type arrhythmia in any position. My heart slows way down for several beats then returns to normal cycles through that for minutes or even hours. I saw the cardiologist and he said it was alternative atrial pacemaker and completely benign. Okay, but it doesn't feel benign and its severely disrupting my life. I asked him about this being some kind of ANS problem like Vagus and he seemed to think it was some kind of vaso-vagal depressive issue. So you're suggesting that there might be an auto-immune problem, i.e. my immune system is attacking my own nerves? Could be. However, I noticed that this started just several days I tapered off my Prilosec, so I was thinking some kind of acid damage or at least over stimulation of the vagus nerve system. I also notice the quavering is worse in the morning, so maybe something with excess cortisol.

Many thanks for your input. Any other input is most welcome.

[Jerry]

E, autoimmune has not been on the table so far. I'll make sure to put it there.

[arizona girl]

Yes, that does sound a bit different, then what I described. Did your doc do a full cardiac work up on you? Sometimes second opinions are needed. If you think it might be medication related, did you try starting that med again to see if you improved? Many of us do what is called a poor man's tilt in our homes to determine if we are have changes in our bp/hr both supine and standing. This might help you tell if the brady is happening at other times. If you've already done that, then you probably do have a good idea of what is happening with you with posture change. Most of us with dysautonomia have symptoms when standing that go away when we are supine. Though I see why you might be focused on a vagal response, but again that is also a nerve problem more than a cardiovascular problem. It is fairly easy to rule out endocrine causes, have they looked at your cortisols and/or done an acth stim test?

Are your tremors only happening when you're brady? Have you been worked up for the tremors yet? I know when my hr/bp drop during sleep my muscle contract and I get rigid and in pain. I'm thinking it is my bodies way to get the blood moving. Maybe tremors are a way to force the body moves the blood. The body can do some amazing things as compensatory responses. A neuro might be a better choice for determining what is causing those then a cardio. Cardiologist are very good at what they do but they tend to stay in their lane and not look broader, at least in my experience. Early on no one ever suggested I see a neuro, but when I finally got to the right one he was able to diagnosis me.

We all know our own bodies the best, if you feel something is not right then trust your own gut. I'm not suggesting that an autoimmune cause is the only thing that can cause the symptoms that you are describing, there can be many types of causes. Figuring out what direction go when determining cause is probably the hardest part of the diagnostic process. It was for me.

When you mention symptoms like tremors, digestion and low heart rate, to me, that points to something like nerve damage. The tremors could be associated with the large nerves, maybe the small ones, but HR and things like digestion are often associated with the small fiber nerves. If they are damaged then the question would be why. Diabetes is the most common disease that damages them, as are autoimmune disease, but medications and other types of injury can damage them to. It really takes looking closely at your own medical history and noting symptoms you may be having that seem unrelated.

Hope I was able to help you troubleshoot what to look for. If you think it's your vagus nerve involved then maybe look for a physician that does research in that area.

[Jerry]

Arizona, you've been terrifically helpful. No, the trembling it not only when I'm brady, but it does seem like it's more often when I'm brady. Please tell me more about this poor man's tilt test, if you would be so kind. ]

You're right about this looking like nerve damage. It looks that way to me. I also agree that the big question is why. Earlier this year I had several surgeries, three esophageal ablations and one gallbladder removal. I've seen somewhere that sometimes neuropathy can come as a result of trauma such as surgery. I don't know if that's true or not.

No, I haven't been checked for cortisol, but I've come to the conclusion that I should be. Thanks for all your help.

[Jerry]

No, I haven't had a workup yet with a neuro, but I just set one up for next week, so we'll see. But given that the trembling is arms and legs and trunk I'm starting to think it's endocrine rather than neuro.

[Chaos]

If you are noticing the trembling associated with meals and thinking it might be endocrine, you could try buying a cheap blood sugar monitor at Walmart or Walgreens. I think the monitors can be purchased pretty cheaply OTC. If you buy an off-brand one you'll save money on the test strips which will be where the money is really spent. Might be interesting to just watch your blood sugars for awhile to see what they are doing. While I'm not diabetic, I have noticed a definite relationship between what I eat (especially sugar) and tremors and tachycardia at times. My blood sugars will usually stay within normal ranges, although I do get hypoglycemic, but sometimes the rate of change is pretty fast which can make me feel bad as well.

As far as a poorman's TTT, it's generally best to do in the morning as you've been lying down all night. Otherwise, lie down quietly for 30 minutes first. Then stand for 10 minutes by the side of your bed (so you can quickly lie down in case you get symptomatic and need to stop the test). Take your BP and HR at 1 min, 3 min, 5 min, 8 min and 10 min and record them. Do this with as little movement as possible and while you are standing try to avoid any excess movement like wiggling your toes, shifting weight etc.

You can do this several different days as most people will have different results on different days.

The idea is that with dysautonomia the ANS isn't capable of maintaining normal homeostasis on it's own and therefore has to rely on the muscle pump to keep blood circulating back up to the heart and head. That's why you want to minimize movement while doing the test.

Good luck with your neuro appt. Hopefully you'll have a good one, but recognize that not all neuros are created equally and a lot of them don't know anything about ANS issues.

[Jerry]

thanks for all the guidance, the blood sugar thing is worth looking into. I've been sugar free for ten years, but that doesn't rule out endocrine issues messing with my blood sugar.

Now about this TTT, what am I looking for with those reading, what is a confirmation? Dropping BP, lack of rising, slow rising? How does one interpret that data?

[Chaos]

For a POTS diagnosis, the standard is 30 BPM rise in HR in the first 10 minutes of standing. Most publications say the HR should rise without the BP dropping during that time for a POTS diagnosis.

As others have said POTS is just one form of dysautonomia though so it can get confusing. For example, some of us have both POTS and neurally mediated hypotension or neurocardiogenic syncope. So we may get the initial HR increase without the BP dropping immediately, but then get a big pressure drop a little later. If you see a >20 point change in systolic and >10 point change in diastolic BP that may indicate orthostatic hypotension or NMH/NCS possibly. If you see the top and bottom numbers getting closer than 25% difference, then you have what's called a narrow pulse pressure which is also common in dysautonomia (for example, 100/84 BP would give you a pulse pressure of 16 points, which is less than 25% of 100 therefore considered to be a NPP).

Probably best if you can record your findings and then show them to a knowledgeable physician so they can assess the significance of them since the above are just rough ideas of what you could be looking at in general.

[arizona girl]

Hi Jerry,

Chaos kind of answered your questions. Thanks Chaos! I did want to mention that if you don't have a automatic blood pressure cuff yet, you will need to buy one in order to do poor man's tilt test. There are also forms of dysautonomia that cause the bp along with the heart rate to go up. That is called a hyperandrenergic response and is caused by the body shooting off extra norepinephrine in order to constrict the blood vessel to force blood to the brain. The test for this is called a supine to standing catecholamine test. I have hyper pots and near syncope, due to the small fiber nerve damage.

Also here is a link to a research article describing a pots evaluation: http://www.bjmp.org/content/postural-orthostatic-tachycardia-syndrome-pots-evaluation-and-management

You can also search all the old forum posts for more information on anything you are interested in. Much of what your asking as been asked and answered many times on the forum.

Yes, physical trauma like a surgery can trigger dysautonomia or damage nerves.

"But given that the trembling is arms and legs and trunk I'm starting to think it's endocrine rather than neuro." In this quote you meant to say you think it is neuro rather than endocrine right? It couldn't hurt to have both evaluations done, but I'd lean towards neuro. Also before your appointment with your neuro, did you attempt to find out if that doctor is familiar with small fiber neuropathy testing and/or autoimmune neuromuscular disease? There are many types of neurologist and they tend to subspecializes, ie brain/seizures vs autoimmune neuromuscular. A brain guy isn't going to be much help if you're experiencing neuromuscular causes.

I got to my current neuro after asking the neuro I was seeing who wasn't finding anything from a large fiber perspective, "Well, what about small fiber neuropathy?" It was like they were the secret magic words that opened the door to me being sent to the right doctor.

I wish you a quick and easy diagnostic process, that is what I would have liked someone to wish me. However, be prepared that this might take a while to get answers.

[Jerry]

Thanks to both for the detailed answers. I'll take my pressure tomorrow morning in phases to see what I learn.

Yes, I do lean towards neuro rather than endocrine, though I really don't know one way or the other. Everything seems to be pointing towards some sort of dys, but centered on the vagus, because of my bradycardia. The thing which is perplexing me is the tremors which I don't how they would be vegas related, or maybe I'm wrong. I see how the vagus would affect my heart and my digestion, but not how it would cause this trembling in my arms and trunk. Am I missing something, can vagus damage cause tremors and twitches?

I'm afraid my neuro is just a regular neuro. I tried to skip that step and find an ANS specialist, but I couldn't, my Primary's starting me with just a regular neuro. I don't mind that entirely, because these tremors have me worried about CNS too.

My doctor was not attuned to ANS issues, but responded to my suggestion because he had just recently had a patient who had sustained vagus damage, and was about to get cardiac surgery before they figured out what was really wrong.

Thanks to both of you, and any other insights which come to mind as you read this, would be received gratefully.

[looneymom]

Hi Jerry,

My son has tremors. At first he was only having them off and on. The doctor and I thought they were an orthostaic tremor. They would happen when he was sitting, standing, or walking. Back in 2013 my son got a very bad case of the flu. The tremors have been very severe and disabling. Since this time he has not been able to stand up or walk. He is wheelchair bound. A workup from and endo or immunologist would be a good thing. My son's tremors are being caused by an immune problem. He has very high levels of Cam Kinese II in his body. This antibody can cause heart failure and neurological problems. The antibody is found in patients that have had Rheumatic fever. It is caused by strep infections that do not get cleared up by antibiotics. With every strep infection, these antibodies keep multiplying and the body just accepts them. In return these bad antibodies just keep doing more damage to the body. My son was having strep infections without spiking a fever and rapid strep test would show negative. An immunologist and our cardiologist figure this out after some testing was done to check for past strep infections. My son has an autoimuune condition that has been caused by strep infections. It has made his POTS condtion much worse. He does have low heart rates when he is sitting down and sometimes his tremors do get worse. Hopefully you can find some doctors to work with your cardiologist. Our cardiologist collaborates with other neurologist because they are not comfortable with trying to deal with my son's low blood pressure and heart rate problems.

[Jerry]

Looney, so sorry to hear about your son's problems, but glad that you've made progress. Thanks for the information,

[Jerry]

Chaos, thanks for the advice. I think I will pick up blood test kit and start doing some testing.

[Friedbrain]

If you think it could be cortisol, an Endo is who you would see for assessing function of your HPA axis (cortisol). I have problems w low Bp and severe trembling spells. After reading a lot, my best guess us that those episodes may be due to an "adrenaline shock". I also have problems after eating, ranging from mild tremors to complete crashing where I fall asleep and can't move for hours and hours. After trial and much error, I learned that my body can't handle carbs. The heavier the carb load (er pure sugar around holidays?) the more severe the response I now follow a modified diabetic diet where I try to eat smaller more frequent snacks w low sugar content and which are always comb w protein and fat (to slow carb processing).

[Jerry]

I'm afraid the low carb diet won't help me. I've been low carb for a decade. Haven't had sugar in ten years, so I don't really know what to do. I do think you're right that we might have to look towards endocrinology, so far neurologist hasn't really found answers.