Thoughts On Getting Started?

[gjensen]

I have recently been diagnosed with dysautonomia. Though I came to the realization that I had some form of autonomic dysfunction some time ago, the local doctors have been no help to me.

I am a 40 year old man with a beautiful family. I have been very fortunate to have had enjoyed good health my entire life. I was very active, and always had a project to do. My main concern is being able to tolerate some level of activity again, and to actively finish raising my boys.

Looking back on this, I suspect that I had some warning signs for a long time. Eight months ago, I began to have difficulty swallowing. Food would get caught in my nasal cavity, and I would get a lot of mucus in my esophagus. The food would get caught in the mucus, giving my gagging choking episodes. I am not eating solid food.

At the same time, my ears began ringing constantly. I also began to have difficulty breathing. The breathing episodes would "come and go". My exercise intolerance was getting worse along the way.

I began to have issues driving. Near syncope episodes, or just weird out of place sensations. These spells would wax and wane.

Eventually, I identified my blood pressure and heart rate fluctuating abnormally. Then I identified blood pressure spikes sitting up right. I was able to manage this by walking them off. In time, the tachycardia upon standing became an issue. Standing any length of time causes my blood pressure to get too high. Now I have drastic blood pressure drops upon standing.

Some things that new to me is central sleep apnea that can be severe. Some nights are better than others. Recently these spells include body tremors. I wake up trying to get air into my lungs with a need to swallow. It takes some time to swallow, where I have an easier time breathing afterwards. I chatter as if I am cold with that swallow.

I get a lot of muscle spasms, leg jerks etc. Especially at rest. Noise intolerance seams to be growing, especially certain tones. I am also having what I call "mini seizures", even if that is not what they are.

These "mini seizures' usually start by my ears ringing especially loud. Then an awful disturbing sensation spreads over me. Then my heart rate jumps, and sometimes to 250bpm. I get very cold, and I begin to shake dramatically. Usually my digestive system gets very upset during this. My digestive system is a mess. I have lost 30lbs off of a thin frame.

I have been to the ER more times than I would like to admit.

I did get to Duke University where I received my diagnoses. The doctor is not a sub specialist, but he understood me right away. What I like, is that he is immediately digging into the why and how. That seams to be his real concern. He is convinced that I have a problem, and he is not trying to prove that I have a problem. I do realize that some specifics will need to be known.

My tilt table test results summary lacks some information. My heart rate did go to 160, and my blood pressure dropped to 70/40. This was with Nitroglycerin.

Typically I have the trachycardia, with an increase of near 100% at times. My blood pressure does fall, but not nearly as bad as it did with the nitroglycerin.

My normal blood pressure is good, but with standing it gets real high. I have low blood pressure in the morning.

They gave me Bystolic at an ER visit, and it has tamed the heart rate spikes, but I still get the high blood pressure. It also drops my morning blood pressure too low. I only take 1.5 mg, but they gave me 5mg tablets. I think the 5mg would put my blood pressure too low, but I am not certain.

I would like to know some impressions from my description. It has become obvious that I will be the one responsible for my care and treatment. This situation does not seam to be properly understood.

There is so much more, but I have rambled enough. I am trying to sort tidbits from the very good posts and threads on this site.

This site is full of very intelligent and helpful people.

[corina]

Hi gjensen, welcome to the forum! How this forum will be a comfort to you, I found it really comforting knowing I wasn't the only one! You will find lots of supportive people here.

[KareBear]

Welcome, I am sorry you have to join us but hope you find help and support. Have you tried seeing a doc that specializes in POTS or ANS disorders? There is a list of docs on this site and you can see if there is one close to you. There are so many symptoms associated with dysautonomia, and of course your symptoms do match up with others here, but also many illnesses have similar symptoms. I know the frustrations of the ER, they never seem too helpful for us, but I suppose are schooled mostly on life saving techniques. Keep being your own advocate, it's hard but it will pay off!

[looneymom]

Welcome to the forum. It's good to hear that you have a doctor that's willing to find out what's going on. That's the half the battle and the other half is trying to stay functional. Lots of good information on the forum and many people willing to share their experiences.

Rachel