Possible dysautonomia?

[SteveC]

Hi, new member here I wonder if anyone can advise on whether it sounds like I possibly have dysautonomia. I understand nobody can offer medical advice and it's just opinions. 

I've been off work for a couple of months now and I've had appointments with cardiologists and neurologists who have all found nothing sinister. Heart looks healthy with an echo and ECG. I had a clean emg on nerves and clean mri scan with neurology. 

I first started having mild problems over 2 years ago when I noticed problems with fine motor skills. My hands weren't quite right and then muscles were twitching all over. Hence the neuro check up. 

But 3 months ago I started getting dizzy spells. Just moments of being off balance at work. Then one day I was at a football game with my son and at half time I got up to go the concourse and it felt like I was about to pass out. Very faint, could barely walk. We had to leave and I struggled to walk to get a taxi. I ended up in A and E but was given the all clear after many tests. 

Since then I've tried to return to work twice. At first I'm ok but over time I can feel myself getting worse. Dizziness to start, then comes the faintness it's really bizarre. If I don't act quickly by getting home and lying down I can become really ill for days. My body will hate being upright or on my feet for any time. Climbing stairs will cause my heart to thump out my chest. Eating anything high in carbs will raise my pulse over 100 and I'll be dizzy constantly. 

What's strange is that once recovered I can be 90% better. I'm quite physically fit and could run a few miles today and makes me feel guilty for being off work. 

I've come to realise some triggers. Crowds make me dizzy, flouresent lights and video games aren't good. (work is full of flouresent lights). Stress is a no go. My GP mentioned vestibular migraines and it does explain some things but not all. 

I sometimes can't stand and talk at the same time. I get this horrible feeling like I have a dial that controls brain activity and someone suddenly turns it down. It's weird why the combination of standing and talking can do this. 

One time I was walking the dog. Feeling great listening to music on my earphones. Then suddenly I felt my heart racing. I took my pulse and it was 140 and I was going dizzy and faint. It was so bad I had to call to get picked up as I couldn't put one foot in front of the other. What I noted that just before the episode the song I was listening to was high tempo. the type that gets adrenaline going. I no longer listen to loud music 😔

I've taken my blood pressure at home many times when symptomatic and when not and never detected a fall even though it feels like it's low. 

I have a holster monitor ECG to wear next week for 24hrs to try and detect abnormal rhythms so maybe that will show something. I do get a lot of palpitations and heart racing at odd times. Sometimes chest burning. 

Some days I've felt breathless for no reason. Like there's not enough oxygen in the air and I have to take big gasps now and then. Quite a horrible feeling. 

Oh, I also have problems swallowing sometimes especially dry snacky foods. I'm constantly coughing up food (sorry) which isn't going down the right way. It feels to me like a coordination issue rather than weakness. Same as with my hands. 

I could probably write a list of other odd but mild symptoms but these are the worst and most troublesome. 

Sorry for the ramblings I just don't know what to do next. Anxiety has been suggested which I'm working on but I was fine before all this started and some things never go away even when I'm perfectly calm. 

So... Do i sound like possible dysautonomia? 

Thanks for your time. 

Steve 

[Pistol]

Dear @SteveC - I am so sorry you are going through this. It does seem to me that some of your symptoms could stem from dysautonomia, especially the fast HR, inability to be upright for long, the fact that it improves with lying down and the exaggerated response to overstimulation. But some of your symptoms, like muscle twitching and swallowing difficulties, could also be from other causes. 

When you get your monitor you will be instructed to describe your symptoms and activity when you push the button. that is very important for this reason: if you simply push the button for dizziness or fast HR the doctor will think you may be very physically active - which would be causing the symptoms. However - if you feel dizzy, have a fast HR and palpitations and you simply stood up from sitting - that would be an abnormal scenario. So it is very important that you describe exactly what is going on whenever you push the button. 

Has your cardiologist ever taken your HR and BP lying, sitting and standing? If not - you can do this at home if you have - or purchase - a BP measuring device. Simply lie down for a good while and take your BP. Then sit up and take your BP and HR after one minute of sitting. Then proceed to stand up and take your Bp after one, 3 and 5 minutes. In POTS your HR would increase 30 BPM or more and stay there after getting up, usually without a significant change in BP ( except for the hyperadrenergic type, in which case your BP would also go up significantly ). Important in addition to the numbers would also be your symptoms your are experiencing during this test. 

If your numbers and symptoms are significant this may be caused by dysautonomia. You can read more here

 

2 hours ago, SteveC said:

Oh, I also have problems swallowing sometimes especially dry snacky foods. I'm constantly coughing up food (sorry) which isn't going down the right way

This sounds like dry mouth, which can be caused by many different things. Dysautonomia CAN cause this if the ANS causes the body to not produce saliva. This should definitely be brought up to your doctors. It can also be a cause of certain medications. 

Since you suspect dysautonomia the best steps to take are usually drinking lot of fluids, increasing your salt intake ( if approved by your doctor ), wearing compression stockings ( you can get these at any medical supply store where they can measure your legs to get the right fit, very important ) and changing positions slowly. Mild exercise is recommended and avoidance of triggers ( this is the hardest part b/c it often has the biggest impact on our lifestyle). 

I personally would be diligent in recording everything you experience while wearing the holter monitor, take your orthostatic Vital signs on several days and research as much as possible about dysautonomia so you can go to your Follow up appointment with the cardiologist prepared. Also write down any questions as they come up so you do not forget anything at your appointment.  I think you are being very proactive by considering the possibility of dysautonomia and I hope your doctors will be able to rule it out!!!! Best wishes - please let us know how things go! 😉 Be well!

[SteveC]

Thanks for the detailed reply. I believe the monitor I'll be wearing is just one that traces your heart for 24hrs and not the type with an event button. But I'll keep a diary. I just hope I'm symptomatic that day. 

This is where my doubts are. I can be mostly symptom free for days with just some lightheadedness /little dizzy and mild palpitations. Like today if I did a tilt table test I'd pass easily. But when I've had episodes there's been times I've done the home test from standing to sitting and my rate does go up over 30 bpm and I'll be faint the longer I stand. BUT my BP doesn't seem to dip. It goes higher if anything. Can it be this episodic? 

I do think something else is going on that's maybe starting to cause a secondary problem with my ANS. I'll keep the thread updated. 

Thanks again for the info. 

Steve 

 

[Pistol]

13 hours ago, SteveC said:

Can it be this episodic? 

Yes, many people with dysautonomia only get it at certain times, or after certain triggers.  --

13 hours ago, SteveC said:

I do think something else is going on that's maybe starting to cause a secondary problem with my ANS

I also think it might be possible that you are suffering from some other condition that triggered ANS imbalance. Have they considered autoimmune disease? Many people on this forum developed POTS due to autoimmune issues, that is not that uncommon. And autoimmune disease can be very difficult to detect, and sometimes has unusual symptoms that can easily be missed.  Has any of your doctors ever checked for that in a blood test ( ANA, ESR, RF, Lupus, Lyme titer etc )? 

 

[SteveC]

Apologies, I didn't see your next reply. 

It's interesting you mention autoimmune conditions. I've always suspected gluten for years but twice I've tested negative for celiac. But too much gluten definitly makes me feel ill. I also get dry eyes and as you mentioned possible dry mouth which could explain the swallowing problem. I also have a small amount of vitiligo which apparently is autoimmune and usually coexists with other ones. 

I think I'll mention it to doc and see if we can run some tests. 

Thanks again