Autonomic Dysfunction

Hello, @foggy and @chairfield. Very happy to welcome you to Mayo Clinic Connect. I've merged your discussion with this one, called "Autonomic Dysfunction," so that you could meet others talking about similar issues like @tuckerdoodle @jackie1951 and @aithnie.

I'd also like you to meet @apple @brittalisse @kelseylmontague @elizabej @bonny @alina151 @cummings3, who have also mentioned autonomic dysfunction, and invite @sierrawoods @jigglejaws94 to join the discussion.

@chairfield and @foggy, what are the major symptoms you are experiencing?

Hey @tuckerdoodle.

If your symptoms started after your sinus surgery, it makes me wonder if you have a chronic CFK leak (spinal fluid leak). I have hEDS (Ehler's Danlos Syndrome), POTS, dysautonomia, MCAD, a chronic CSF leak in my lumbar spine, etc. I am prone to CSF leaks and have been dealing with one in the last year.

A chronic CSF leak can cause POTS and autonomic dysfunction. Look up Dr. Ian Carroll on YouTube. He explains how a chronic CSF leak causes POTS and how some people have recovered after fixing their leak. If you have a cranial CSF leak. Getting some who understands chronic leaks and knows how to fix them is extremely difficult. My leak symptoms were overlooked by multiple neurologists and neurosurgeons. Finally I told a neurosurgeon that I thought I had a chronic CSF leak and they "ruled it out" with MRI with contrasts, which rarely finds CSF leaks. Then I saw a neurologist who said he ruled out a CSF leak with an MRI with and without contrast to check CSF pressure, which rarely catches a chronic leak. Finally a new primary care doctor familiar with Chronic CSF leaks said I needed a CT Myelogram and she got my pain management doctors to order the testing. Sure enough I have a leak in a nerve root in my lumbar spine. I had a blood patch that worked at first but starting leaking again. Having a connective tissue disease (EDS) makes it hard for me to heal. Trying to get someone else to fix it currently.

Duke University and Cedar Sinai in Southern California both deal with cranial leaks. (They have YouTube videos as well that are helpful). Dr. Ian Carroll at Stanford doesn't deal with cranial leaks that I am aware of.

Do you have have sinus congestion, a runny nose, or post nasal drip? If so, it could be CSF fluid. CSF fluid tends to taste salty and even sweet. Do you get headaches?

With the GI issues and having been on antibiotics, have you been tested for SIBO (small intestinal bacterial overgrowth)? It can happen in dysautonomia but antibiotics can cause it as well. SIBO alone can cause a lot of problems, even systemic issues especially since it can lead to leaky gut. It can also cause GERD. If you are on H2 blockers or PPI's for the GERD, either can cause SIBO, make SIBO far worse, and make all sorts of health issues worse. They both interfere with digestions and absorption of nutrients. GI issues usually get worse in general on H2 blockers and PPI's. And PPI's can increase your chances by up to 50% for chronic kidney failure. My GI doctor referred me to siboinfo.com and a naturopathic doctor for more information about SIBO. Naturopathic doctors and Functional Medicine doctors have been dealing with SIBO much longer. My GI diagnosed it and treated it multiple times but doesn't understand diet, nutrition, and how to address motility issues to address SIBO after it is treated, which often means it will just come back.

Also, research zinc carnosine for reflux. There are medical studies out there about zinc carnosine. It helps me with GERD and gastritis better than H2 blockers or PPI's. It's awesome stuff. It was prescribed to me by my Functional Medicine Naturopathic doctor and it has been a game changer for me.

Getting checked for delayed food reactions can be helpful too. My PCP had me do USbiotek testing for food triggers.

Do you take magnesium? Vitamin D? Both are really common deficiencies. I am prone to vitamin D deficiency and my PCP said up to 80% of people in first world countries are deficient and magnesium is super important for many things.

MTHFR and partial methylation defects can cause a lot of problems too.

Also, there is a private CSF leak on facebook that is full of information and resources.

Good luck.

Where to START? Will work on full list and send comprehensive info. To start have in addition to my autonomic nervous dysfunction undergone 4 lower back surgeries,one cervical fusion and thoracic spinal fractures.

Thanks looking forward to having the opportunity of joining others in sharing their experiences and learning more about autonomic dysfunction.

Thank you @lisalucier for connecting all of us and hi to @tuckerdoodle @foggy and everyone else facing the challenges associated with autonomic dysfunction - you are not alone!! I was diagnosed in 2017, after 3 years of undergoing tests to rule out everything obvious and trying to convince specialists that the symptoms were connected. So now there's a name to it, but because it's idiopathic the best we can do is treat the symptoms, which for me right now means seeing a pulmonologist for shortness of breath, physical therapist for balance and gait, and urogynecologist for bladder dysfunction. The neurologist is so overloaded my next doublebooked appointment is June 2019... The latest challenge is getting approved for short-term disability from work to be able to keep up with all the appointments and treatments. What stage are other people in?

@elizabej
What is this you are talking about and what are the symptoms

See a Dr with DO after name instead of MD, same thing. Doctor of osteopathic medicine. Probably meant to say instead of automatic, somatic dysfunction. Its a term they use when these doctors do gentle manipulations of arms and legs to release the muscles. This is not what chiropractors do, stay away from them, but the DO studies the body differently than an MD. They don't believe that medicine is always needed but by doing these manipulations, make sure you get gentle ones, they can diagnose issues of spine,pelvic, cervical areas. Saved my back, they are doctors, only see them so somatic is a term they use.

I went to the ER was very winded and disoriented and had tingling sensations everywhere and they did labs. My pulse was high averaging at 120 and my bp was low averaging at 90/44. I have have a history of Autonomic Dysfunction that I take 25 mg of Atenolol for. On the labs at the ER my Carbon dioxide came back as Low being only 20 mEq as well as my Creatinine levels and Osmoality calculated. I had ultrasound imaging of my abdomen which was unremarkable. They gave me 2 saline bags and let me go home after my blood pressure increased to about 95/55. I’m still weak and winded though and have pain in my right side of my mid abdomen. Please advise, this is horrible. I have a copy of my labs if necessary.

Hi @edabeda6 and Welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about Autonomic Dysfunction. I did this so that you can meet other members who have had symptoms similar to what you've recently been experiencing, like @tuckerdoodle @aithnie @foggy @elizabej and others.

You might also be interested in joining this very informative discussion in the Lung Health group:
- Lung Health > Mysterious shortness of breath https://connect.mayoclinic.org/discussion/mysterious-shortness-of-breath/

I'm glad that you went to the ER with your symptoms of feeling very winded, disoriented and tingling sensations and that they ran a series of tests. Keep in mind that Mayo Clinic Connect is an online community of patients and caregivers, not medical professionals who can comment on a lab report.

Have your symptoms subsided? How are you feeling now?