Hey guys, I'm trying to find help for dysautonomia

Hi guys I am newly diagnosed with dysautonomia, and I'm looking for some good tips. I'm not sure if this is the right forum and my case is apparently mild. I notice after researching online I had come across a lot of people who have dysautonomia and a hiatal hernia. I believe their is some sort of link but of course since POTS/dysautonomia is poorly understood I cannot prove it. Has anybody heard of this, am I even in the right area? I hope so..because nobody seems to know too much.

Hello Cmac3721. I too have dysautonomia. I have neurocardiogenic syncope and orthostatic hypertension. So my body fights itself all day long. My symptoms are really bad but getting under control with medication. That just means that I don't pass out as much and can get out of bed more days than not. I also have systemic lupus and fibromyalgia. My latest problem is that something is causing lack of blood flow to my central nervous system and I am having a lot of weird things happen that even the doctors have not seen. I love being a first for doctors.

I am not sure about the hiatal hernia question. I was diagnosed about 3.5 months ago but started having symptoms in February. So, I am still learning a lot about this crazy stuff.

What type of dys. have you been diagnosed with? I have been looking for someone who also has this condition just to see what helps them with the symptoms.

If you have any questions for me, just let me know. Take care and best of luck with your condition.

LupusMomma

Wow,great to see this thread. I'm visiting this board as I usually post on the Lyme board.

I am 42yo and have Lyme and was finally was dxed this summer. AND I was also finally dxed with dysautonomia thanks to my Lyme specialist. My bp fluctuations were crazy. Ranging from 175/105 to normal. I took bp meds before my dx, as my GP just said it was regular hypertension, but on bp meds, my bp got way too low and then still went crazy high.

Now I'm being treated for Lyme, I'm on a bunch of stuff including antibiotics, probiotics, COQ10, Iron, Magnesium (as it turned out I had way low CoQ10, Serum Iron, and Mg and that can really impact bp), and spirulina and super green food. I am not on bp meds and my bp fluctuations are much better. I average in the 130s/80s most days. I am amazed that they are improving so well. I still have a ways to go treating the Lyme but overall I'm so encouraged.

These approaches have brought my BP fluctuations way way down. It has been such a relief to know what was causing this, as I've been unwell since 2004. I used to have FMS and had many SLE symptoms too but thankfully many my sx of these have been under contro since 2008.

I wonder if your autoimmune probs and dysautomia could be caused by undiagnosed Lyme?

Also, I wonder, have you ever had your CoQ10, Serum Ferritin (this is different than hemoglobin or hematocrit tests) and Magnesium levels tested? If these two are low, they can cause big swings in BP.

Good luck and I hope this info helps. I'm not a doctor, but I wanted to share my experience. For me getting the right DX that encompassed my FMS, Lupus symptoms and my tachycardia and variable hypertension has led to proper treatment and I am finally starting to feel like I have hope that I can go running again without having a heart attack.