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Tuckerdoodle
@tuckerdoodle

Posts: 4
Joined: Jul 07, 2017

Autonomic Dysfunction

Posted by @tuckerdoodle, Jul 15, 2017

I am curious about this topic, which was mentioned during a recent doctor’s appointment. I have been sick for 15 months with vague but debilitating symptoms. The short version is I had sinus surgery 02/2016, developed Shingles & mono 4 months later that was the result of an undetected sinus infection. Treatment with antibiotics and steriods for a month cleared the infection, but I have been left with other problems. I have heart palpitations, GI problems, fainting, dizziness, extreme fatigue, weakness, body temperature problems and with tingling sensations in my legs and lung pain. I have been scanned, stress tested, tilt table test, endoscopy, colonoscopy, EMG, ECG, heart ultrsound, blood work and now have a loop recorder for the heart. I get a swelling sensation in my chest on the left side that causes dizziness, belching, pain and fatigue. I do have a hiatel hernia and gastritis. I am gluten free, dairy free, red meat free and have been to 15 doctors. I went to running 3 miles a day, lifting 50 pound bags of grain and hay, working full time and taking care of my family. I presently can do small amounts of housework. The last doctor mentioned Autonomic Dysfunction and told me to research…google is vague and cannot find a doctor to who treats this disorder. Any suggestions wil be helpful…running out of options.

REPLY

Hi Tuckerdoodle (your username made me giggle. I’d be interested in hearing the story behind it.)
That is quite the list of conditions. I can only imagine that you have had a rough journey of appointments and few answers over the past 15 months. I hope that I can connect you with other members who can share experiences that may help your investigations.

John provides further reading in this discussion thread:
– Cardiac autonomic neuropathy aka Cardiovascular autonomic dysfunction https://connect.mayoclinic.org/discussion/cardiac-autonomic-neuropathy-aka-cardiovascular-autonomic-dysfunction/

@brie87144 describes similar symptoms and talks about autonomic dysfunction in this discussion:
– Esophagus issues https://connect.mayoclinic.org/discussion/esophagus-issues/

And while it doesn’t sound like you are a teen, I thought you might like to read through this older discussion
– Autonomic Dysfunction or POTS in teens. Help! https://connect.mayoclinic.org/discussion/autonomic-dysfunction-or-pots-in-teens-help/

Other than telling you to research autonomic dysfunction, what does your doctor suggest as the next steps?

@colleenyoung

Hi Tuckerdoodle (your username made me giggle. I’d be interested in hearing the story behind it.)
That is quite the list of conditions. I can only imagine that you have had a rough journey of appointments and few answers over the past 15 months. I hope that I can connect you with other members who can share experiences that may help your investigations.

John provides further reading in this discussion thread:
– Cardiac autonomic neuropathy aka Cardiovascular autonomic dysfunction https://connect.mayoclinic.org/discussion/cardiac-autonomic-neuropathy-aka-cardiovascular-autonomic-dysfunction/

@brie87144 describes similar symptoms and talks about autonomic dysfunction in this discussion:
– Esophagus issues https://connect.mayoclinic.org/discussion/esophagus-issues/

And while it doesn’t sound like you are a teen, I thought you might like to read through this older discussion
– Autonomic Dysfunction or POTS in teens. Help! https://connect.mayoclinic.org/discussion/autonomic-dysfunction-or-pots-in-teens-help/

Other than telling you to research autonomic dysfunction, what does your doctor suggest as the next steps?

Jump to this post

Thank you so much for responding ! And no, I am not a teenager, have a teenager though…the doctors really have no idea of what to do. Today, I fainted just walking across the back yard and it is frightening as well as annoying. My day is then spent on the sofa recovering. The Neurologist suggested either Mayo or Hopkins, I live closest to Hopkins (NJ). And it is truely an investigation and I am the lead investigator, which also is frustrating. Something with my system feels off, or unbalanced and seems to set in motion a chain reaction of events, fainting, weakness, dizziness, GI upset ect. . Since I have several doctors, Neurologist, Cardiologist, GI, I would like to find “a” doctor to oversee everything but haven’t had any luck. I was hoping there was a specific field for this, but it doesn’t look like it…thanks for the links, maybe they can shed some light. Tucker is my poodle mix that will actually sense when I am going to have a “bad” day and literally sit on top of me and stare at me. It freaks me out sometimes, lol….

Hello @tuckerdoodle, I would like to welcome you to Mayo Connect along with Colleen. I don’t have the same health issues but I can relate to searching for answers for my own health conditions. I think you have a head start since you have found Connect and are asking questions. I’m hoping others are able to share some helpful information. I saw a patient video that I think may be helpful.

What happens when you have a disease doctors can’t diagnose – TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:

http://bit.ly/2nvf21H

I use Google Scholar (https://scholar.google.com/) when looking for hard to find information. You can click 2017 in the left column to get the most recent information. I did a search on your phrase “autonomic dysfunction treatments” and came up with quite a bit of information.

https://scholar.google.com/scholar?q=autonomic+dysfunction+treatments&btnG=&hl=en&as_sdt=0%2C24&as_ylo=2017

Keep pushing your doctor for answers. You are your best advocate!

John

@johnbishop

Hello @tuckerdoodle, I would like to welcome you to Mayo Connect along with Colleen. I don’t have the same health issues but I can relate to searching for answers for my own health conditions. I think you have a head start since you have found Connect and are asking questions. I’m hoping others are able to share some helpful information. I saw a patient video that I think may be helpful.

What happens when you have a disease doctors can’t diagnose – TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:

http://bit.ly/2nvf21H

I use Google Scholar (https://scholar.google.com/) when looking for hard to find information. You can click 2017 in the left column to get the most recent information. I did a search on your phrase “autonomic dysfunction treatments” and came up with quite a bit of information.

https://scholar.google.com/scholar?q=autonomic+dysfunction+treatments&btnG=&hl=en&as_sdt=0%2C24&as_ylo=2017

Keep pushing your doctor for answers. You are your best advocate!

John

Jump to this post

Hello @johnbishop, and thank you so much for the video from Ted…it was very interesting and kinda scary also. It nevers stops to amaze me when you have a case in which you have to think outside the box, doctors rely on “it is all in your head” diagnosis. Sad. I have learned to avoid trigger words, emotions and mentioning certain symptoms to keep from losing a doctors attention. You can literally watch their interest disappear in your case. And the standard relpy of, do this test and I will see you back in 3 months drives me up a wall. Why 3 months ? Are things going to be better in that time period, no, no they are not…so the patient lives in limbo, waiting, hoping and praying. Thank you again…

@colleenyoung

Hi Tuckerdoodle (your username made me giggle. I’d be interested in hearing the story behind it.)
That is quite the list of conditions. I can only imagine that you have had a rough journey of appointments and few answers over the past 15 months. I hope that I can connect you with other members who can share experiences that may help your investigations.

John provides further reading in this discussion thread:
– Cardiac autonomic neuropathy aka Cardiovascular autonomic dysfunction https://connect.mayoclinic.org/discussion/cardiac-autonomic-neuropathy-aka-cardiovascular-autonomic-dysfunction/

@brie87144 describes similar symptoms and talks about autonomic dysfunction in this discussion:
– Esophagus issues https://connect.mayoclinic.org/discussion/esophagus-issues/

And while it doesn’t sound like you are a teen, I thought you might like to read through this older discussion
– Autonomic Dysfunction or POTS in teens. Help! https://connect.mayoclinic.org/discussion/autonomic-dysfunction-or-pots-in-teens-help/

Other than telling you to research autonomic dysfunction, what does your doctor suggest as the next steps?

Jump to this post

Hello Tuckerdoodle, I feel for you and what you’re going through. I also have been going through all of your problems starting way back when. It got so my poor, normally very understanding, husband said “maybe you should do an internet search on hypochondria”; until I collapsed at a restaurant sitting across from him he noticed my eyeballs racing horizontally back and forth and rushed me to the ER. The ER doctor ordered a brain MRI and said I should see a neurologist ASAP. It took 6 mos. for a Doctor to say you have ataxia – get a single point can with triangular base and make it your new best friend. Two months ago, I got up out of bed at 3 am on a Sunday and went online and opened up the Mayo website and requested an appointment I heard back from them the following day, completed a medical history form; and, a week later they set me up as a client with complex medical issues. I’ll be going to Mayo in Rochester in August and pray they can help me. So yes, Tuckerdoodle, I understand your frustration and pray all goes well for you.

@colleenyoung

Hi Tuckerdoodle (your username made me giggle. I’d be interested in hearing the story behind it.)
That is quite the list of conditions. I can only imagine that you have had a rough journey of appointments and few answers over the past 15 months. I hope that I can connect you with other members who can share experiences that may help your investigations.

John provides further reading in this discussion thread:
– Cardiac autonomic neuropathy aka Cardiovascular autonomic dysfunction https://connect.mayoclinic.org/discussion/cardiac-autonomic-neuropathy-aka-cardiovascular-autonomic-dysfunction/

@brie87144 describes similar symptoms and talks about autonomic dysfunction in this discussion:
– Esophagus issues https://connect.mayoclinic.org/discussion/esophagus-issues/

And while it doesn’t sound like you are a teen, I thought you might like to read through this older discussion
– Autonomic Dysfunction or POTS in teens. Help! https://connect.mayoclinic.org/discussion/autonomic-dysfunction-or-pots-in-teens-help/

Other than telling you to research autonomic dysfunction, what does your doctor suggest as the next steps?

Jump to this post

I wish you good luck at Mayo…totally understand the husband thing. I had several MRI’s, head, neck, back, liver ect…all neg. But thank you for responding and offering help & wisdom, very much appreciated ! Good luck & prayers for you and your husband.

@colleenyoung

Hi Tuckerdoodle (your username made me giggle. I’d be interested in hearing the story behind it.)
That is quite the list of conditions. I can only imagine that you have had a rough journey of appointments and few answers over the past 15 months. I hope that I can connect you with other members who can share experiences that may help your investigations.

John provides further reading in this discussion thread:
– Cardiac autonomic neuropathy aka Cardiovascular autonomic dysfunction https://connect.mayoclinic.org/discussion/cardiac-autonomic-neuropathy-aka-cardiovascular-autonomic-dysfunction/

@brie87144 describes similar symptoms and talks about autonomic dysfunction in this discussion:
– Esophagus issues https://connect.mayoclinic.org/discussion/esophagus-issues/

And while it doesn’t sound like you are a teen, I thought you might like to read through this older discussion
– Autonomic Dysfunction or POTS in teens. Help! https://connect.mayoclinic.org/discussion/autonomic-dysfunction-or-pots-in-teens-help/

Other than telling you to research autonomic dysfunction, what does your doctor suggest as the next steps?

Jump to this post

I have been diagnosed neurogenic orthostatic hypotension. I am now wheelchair bound. No blood pressure when I stand so I get short of breath and pass out. I have been or medidrine and Northera. Nothing raises blood pressure. HELP

@foggy

I have an autonomic nervous dysfunction and would appreciate hearing from others with the same problem or joining support groups.

Jump to this post

I also have been diagnosed. I was diagnosed 2 months ago after being hospitalized for a week. There are several Facebook support groups on Facebook that I have joined and have given me lots of support and answers

@foggy

I have an autonomic nervous dysfunction and would appreciate hearing from others with the same problem or joining support groups.

Jump to this post

Thanks. I was diagnosed 3 years ago following several admissions to hospital.

I have an autonomic nervous dysfunction and would appreciate hearing from others with the same problem or joining support groups.

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.

@lisalucier

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?

Jump to this post

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.

@lisalucier

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?

Jump to this post

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

@foggy

I have an autonomic nervous dysfunction and would appreciate hearing from others with the same problem or joining support groups.

Jump to this post

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?

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