Possible Dysautonomia?

[phillipc421]

Hi guys,

First post here but I've been having an absolutely terrible two to three weeks following a positive tilt test. I've been having symptoms for the past three years of dizziness (not spinning but more a drunk internal feeling and the floor not being stable), lightheadedness, tingling in limbs, neck and lower back pain. These are the main symptoms but I seem to have random and smaller feelings of just overall being off or weird. Sometimes I get very hot and am absolutely sure I will pass out but I never have. This past week has been especially bad but I am suspecting anxiety following the tilt table and a neurologist telling me I have POTS which I just do not want to believe.

Basically for the past three years I've just been feeling bad and it's hard to enjoy anything. Going to work is stressful and I don't like to leave the house. I've had a full battery of testing (neuro, cardio, blood, ent) and all have been normal. I was just coming to believe that this may all be anxiety as Ativan does help me. However, I remember vividly when the symptoms started and it was abrupt, so that stuck out to me as odd. It's so bad that now when I do have brief moments of feeling fine, it scares me because it is so out of the ordinary.

I was sent for a tilt study to "ease my mind" and it came back positive. Everything was stable and normal until I was given Nitro at 20 mins in. My heart rate went up and BP crashed. Nothing like this has happened outside of this test. Cardiologist performing test said its Neurocardiogenic Syncope, Neuro who ordered the test says POTS. I do not believe its POTS but its taken over my life as I am constantly checking my pulse and BP and the numbers baffle me. I'll have good blood pressure when I feel terrible, high BP when I'm feeling good and vice versa. I do met a lot of the symptoms as people with Dysautonomia but also I'm missing some of the key markers for POTS. My pulse does not increase 30 beats. I notice some red in my toes, especially if sitting but not standing.

I've been keeping a log. My pulse is higher in the mornings 80-90, can jump to around 100 when standing up but then comes back down to 80-90. Blood pressure has dropped and also has not within the first minute but then usually regulates. I was under the impression this is normal. Now seeing it scares me. I've been having really bad nausea each morning with this increased pulse which is new. I could see this being anxiety, but have seen some people report this with Dysautonomia. By the evening or mid day, or even when I get home from work, my heart rate idles around 60-70 sometimes even 58. I am pretty fit. Throughout this journey I've been continuing to workout as it was a passion of mine, but now I am scared of it. I have heart skips during workouts and often feel like *** afterwards. If I do cardio my pulse will stay high (~100) all day. I've taken over a week off from gym but not improvement in symptoms.

Bottom line, I'm obsessing over the possibility of having dysautonomia but also anxiety and I don't know which to believe. I would hope not both. I do have anxiety for a fact, but after learning about the positive tilt, I wonder if some of my past episodes were not anxiety at all. Some of the symptoms of pots make sense to me but not all.

Sorry for the long post, just wondering if anyone here has an opinion or had similar experiences.

[Guest KiminOrlando]

I'm sorry to hear about your diagnosis. Hearing you have an incurable illness is very disheartening and there is an adjustment period just to come to terms with it. My advice is to trust your doctors and try the treatments that they offer. You may find some of them make your life better. Don't stop working out, but you may have to throttle it back because recovery time after workouts is a real thing. Maybe your doctor would be willing to send you to physical therapy to show you what kind of exercise would be most beneficial. 

Many of us were first diagnosed with anxiety, but the diagnosis was incorrect. Anxiety symptoms can be part of POTS and NeuroCardiogenic Syncope, but the root is medical, not psychological. 

I hope you are able to find a way to treat your symptoms and bring balance to your life. 

[phillipc421]

Thanks for the reply, the problem is I've had other doctors who do not believe this and think the tilt testing is inconclusive as a I only had a response given the Nitro. Does Ativan help pots?

[Guest KiminOrlando]

I believe Ativan DOES help certain kinds of POTS. I am not on these types of meds so I can't speak to that. Did they draw catecholamines on you during the test?

I still have doctors who say it is psychological. I once had a medical reaction to a med, mixed with dysautonomia, and they STILL tried to transfer me to the psychiatric floor of the hospital instead of treating me medically despite my diagnosis from Vanderbilt. The medical community is biased against this diagnosis. It is slowly changing and you are lucky to have found an open-minded doctor. 

Depending on what kind you have, the psychiatric med may help for a while, but a true medical condition will still show itself, albeit years later. At that point, you may be labeled as a psychiatric patient. Some of us have had to stop working and file for disability, but labeling the illness as anxiety causes it to be denied. Tilt table tests don't accidentally come up with POTS and Neurocardiogenic Syncope. Getting these diagnoses is difficult, so if you got even one, I would bet it is accurate. It is more common to be symptomatic and NOT get the diagnosis. Many, many patients live in limbo between being too sick to work, but unable to get a diagnosis/treatment/disability. 

[phillipc421]

I don't believe they took any blood during the test. My tilt was completely normal without the Nitro. Do you think it would say something about real life since there is no drug provocation. I do have heart rate increases but it stabilizes again. Usually worse in morning. A CSF leak was brought to my attention that I may look into. Apparently it can cause autonomic issues.

[Guest KiminOrlando]

Absolutely look into the CSF leak. It might resolve this. It could even resolve the anxiety or you could be left with non-dysautonomia anxiety. Either way, it cannot hurt to see what they say.

Some tilt table tests don't draw blood. I thought if they did, it might tell you more.

[Pistol]

7 hours ago, phillipc421 said:

My tilt was completely normal without the Nitro.

Dear @phillipc421 my very first TTT was like yours. All was well until 20 minutes into the test they gave me Nitro, my HR rose and then plummeted and I passed out. They told me NCS, as with you. At that time I passed out frequently. Another TTT a year later was interpreted as normal by that EP ( who was not educated about POTS ) but once my autonomic specialist reviewed the test he said it was clearly POTS ( HR increased over 30 BPM until the end of the test ). I then was diagnosed with hyperadrenergic POTS by blood tests for neurotransmitters. 

As far as I know the initial treatment for NCS is similar as for POTS: increase oral fluids, increase salt intake and wear compression hose ( this should be purchased through a medical supply center where they can measure your legs in order to give your the right fit for your body type ). 

14 hours ago, phillipc421 said:

Throughout this journey I've been continuing to workout as it was a passion of mine, but now I am scared of it. I have heart skips during workouts and often feel like *** afterwards.

In general with dysautonomia ( whether POTS or NCS ) mild aerobic exercises are recommended. Strenous exercises have been found to worsen symptoms. You may want to read this article from our website: 

Your symptoms could improve by following these simple steps as well as following up regularly with your doctor to go over any changes. Best of luck!

[phillipc421]

Thanks, @Pistol. I have no history of passing out. Do you think that would be of any importance to this diagnoses? How long does your heartrate sustain high? I can stand for multiple hours albeit at a 80-90 pulse. The only time I've seen it go over 100 is immediately in the morning or when exercising but after exercise is normal. Lately I've not been able to eat in the mornings for multiple hours. This came on suddenly after being told a doctor thinks it's POTS. I could see this being anxiety but its intense. Ativan helps it. Thoughts? 

I'm just trying to see what I need to tackle the most.

[p8d]

I think I read some medical article that 80% of people with POTS do not pass out.  I never have in 5.5 years.  My neurologist did my TTT and they don’t give the nitro but I failed spectacularly anyway.  The test was truly the absolute worst experience of my life.  They have occasionally wanted to repeat it but I will not submit to that again unless there’s a really, really good reason.  My catecholamines are elevated so I am hyper POTS and take alpha blockers to help with the adrenaline surges.  My neurologist, a dysautonomia specialist who used to work at Mayo told me to not take benzodiazepines so I never have since diagnosis.  I know many people do take them.  Before my hypertension got out of control the one thing that raised my BP and therefore lowered my HR in the morning was to drink 12 ounces of water 10-15 minutes before getting out of bed.

[phillipc421]

@p8d interesting, that is why I am skeptical since I had no problems without the nitro, it was quite terrible afterwards though. Ativan is currently a life saver for me but I do worry about building a tolerance, I try not to take everyday. 

[Pistol]

@phillipc421 you do not have to pass out to have NCS or dysautonomia. Feeling as if you are about to pass out ( pre-syncope ) is counted as syncope because it is caused by the failure to adequately circulate the brain due to changes in BP and HR. Here is a very interesting article that might answer some of your questions: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

Especially this paragraph caught my interest for you: 

Symptoms include mental clouding (“brain fog”), blurred or tunneled vision, shortness of breath, palpitation, tremulousness, chest discomfort, headache, lightheadedness and nausea. While pre-syncope is common in these patients, only a minority (~30%) actually pass out.

The chest pains are almost never due to coronary artery obstruction, but are sometimes associated with electrocardiographic changes in the inferior leads, particularly when upright [6].

Many patients complain of significant exercise intolerance and extreme fatigue. Even activities of daily living, such as bathing or housework, may greatly exacerbate symptoms with resultant fatigue. This can pose significant limitations on their functional capacity.

The disorder primarily affects women of child-bearing age. The female:male ratio is 4:1. The reason for the strong female predominance is not known, but it should be noted that orthostatic tolerance is reduced in normal healthy females [7]. Others disorders such as autoimmune diseases and irritable bowel syndrome are seen commonly in patients with POTS, and also have higher prevalence in women.

Patients frequently report that their symptoms began following acute stressors such as pregnancy, major surgery, or a presumed viral illness, but in others cases, symptoms develop more insidiously. About 80% of female patients report an exacerbation of symptoms in the pre-menstrual phase of their ovulatory cycle (unpublished data). Gazit et al. have also reported an association between joint hypermobility and POTS [8]. Many patients have bowel irregularities and have been co-diagnosed with irritable bowel syndrome, and some have abnormalities of sudomotor regulation [9].