Newbie - shocking symptoms, not in a good place :-(

[Gordon73]

Sadly I seem to have developed a major autonomic dysfunction - been in and out of hospital every other day for the past 6 weeks but still no firm way forward.

6 weeks ago I developed a left flank pain towards the back beneath the ribs. I also noticed my resting heart rate was always 90-100 (I was previously a fairly fit runner, resting heart rate 60 or less). Now my heart is denervated and does not respond to exercise - won't go over 120 (which is what it is when I'm simply walking around). I feel dreadful - full body aching, wired, super hungry craving carbs, constant urination, constipation. My symptoms are circadian - I have chest/back pain at night which may be ischaemic, my QTc has also increased and I'm prone to some dreadful palps especially in the evening, and it's just super scary. Been in ER a few times. Not found much solace reading up on diabetic cardiac autonomic neuropathy! But basically I have all the signs and symptoms but without the diabetes!

I've stopped sweating (no more deodorant at least!!) - i'm constantly alternating between too hot and too cold. I flush badly. My skin is so dry it cracks - I have bleeding from the nose, coughing blood from inflamed/dry lungs... blood stigmata appearing in places

All basic bloods are OK, upper body CT clear, CXR clear, EKG normal (sinus tach), U/S of major organs clear, CT Angiography clear..... Holter, exercise stress test and echo scheduled ... maybe an MRI ... I need to formally rule out endocarditis/myocarditis, heart failure - although they seem unlikely..

Been handed the 'anxiety' card .. I am, but only cuz I'm scared. Can't work, essentially housebound, loving wife and kids but I wouldn't have wished this upon them in all my life...

I just needed to post to offload, I know many others are suffering too...

[Gordon73]

Paul,
Thanks this was such a kind, and supportive reply - thank you. I have an endocrinologist and a cardiologist now, and hope to make some progress but as you say this condition falls between the cracks a bit. It's not clear cut, and it is a syndrome of sorts. I wondered about melatonin - I read a few papers describing the blunt response of diabetics suffering from autonomic neuropathy to the circadian rhythm (no BP drop over night for example). And my sleep cycles are mashed for sure - there was some hope in one paper that getting a normal BP/HR response to the day/night cycle might be possible with melatonin. I'll give it a try anyway.

You've offered some great insights in your reply and I'm going to spend some time researching those - it is hard with so much information to know how to 'present back' when dealing with medical professionals. You sometimes end up feeling like an idiot reciting a 'pop' account of arm chair medicine! Especially in the time allotted to a typical consultation. Never-the-less I will persevere.

Thanks for your support

[paulcarignan]

Hang in there Gordon! My symptoms vary somewhat from yours but I've been part way through the testing regime you describe. My lab tests, including EEG, ECG, CT, etc were all normal but naturally I had no symptoms while being tested. Last month my symptoms became alarming to me and my wife but I did not require hospitalization since symptoms resolved on their own. My doctor was not sympathetic or especially helpful so I have been spending all my time online since I was facing the prospect of disability.

"Lucky" for me that I was diagnosed clinically depressed have taken Prozac for 25 years. That and similar SSRI drugs are one medication prescribed for dysautonomia, so maybe that has modified my symptoms. I have no side effects. If you are at wits end, you might consider a low dosage to see if it helps or whether you have a bad reaction. If nothing else it may help alleviate the anxiety and depression that accompany our condition. No, you are not going crazy! Cognitve-behavioral therapy has also helped me better manage my moods and understand myself. We would be fools not to be anxious about unexplained severe symptoms, duh!

Besides finding out that dysautonomia is a thing and that at least a little bit is known, discovering I have very low stomach acid (hypochlorhydria), another effect of dysautonomia. Even people with acid reflux and heartburn may actually have insufficient stomach acid. Without low enough stomach acid, our bodies cannot properly digest food and absorb nutrients regardless of how many vitamin supplements we take. You can be tested for this, but I tested myself as suggested on the internet. I bought HCL with pepsin supplement, very available and cheap) 650 mg. Took one with a meal, no effect, so next meal I took two, no effect, etc. The only perceptible effect would be heartburn or a burning feeling which i never have. After I started taking four I immediately felt better and each day have continued improving. No doctor will suggest this HCL challenge, but you can rule out low stomach acid at home, yourself, for a few bucks at the risk of temporary heartburn. You can also get a Heidelberg stomach acid test for considerable costs and only a few facilities. Other tests are invasive and uncomfortable. I'm only sharing my experience with you and am definitely not recommending or suggesting, only informing.

I hope that your tests rule out any of the dreaded diagnoses and that you can find the right combination to treat yourself. Our symptoms do not fall in convenient pigeon holes, explaining why no specialists can diagnose us. The cluster of symptoms are life trees in a forest, so only a generalist can see them. You might be able to find a holistic or alternate health provide who can help you back into a healthy life, once all the specialists rule out each special condition one by one.

For now I'm spending my spare time learning all that I can through research and sharing what I learn with the public so people become informed. Please know that you are not alone.