In 2011 I was diagnosed with dysautonomia. It is not POTS, but another form. I would love to converse with others to find out their form of treatment. I’ve been told there is no cure…but I have hope.
Interested in more discussions like this? Go to the Autoimmune Diseases group.
Hi @neeci, and welcome back to Connect. How has your condition changed since 2011?
I’m tagging a couple other members – @hayliesmom, @emelisseb and @bearylynn – with hopes that they with share their experiences, which includes there children having dysautonomia.
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My symptoms come and go now, instead of being constant. They made stay for weeks at a time but I do occasionally get days of relief. Also, they are usually not as severe.
I was diagnosed with this in 2014 and am having a hard time dealing with this ontop of all my other medical conditions
Hi Mojoearle! Would you like to share the treatment you are going thru? I am on propanolol 4X daily and sulendac (anti-inflamatory) I’d love to hear your coping strategies. Thanks
Thanks to Colleen for inviting me in on this group. My son, daughter, and I all suffer from dysautonomia, and all of our symptoms are quite different. I was surprised to discover we all had the same underlying disorder. Clearly genetic in our case, but I have done lots and lots of research, and it seems that dysautonomia manifests differently in each person affected. We have seen numerous doctors and have done endless testing. We have finally come up with some pieces to the puzzle (though we are not sure yet how they all fit together).
Welcome. Sorry to hear that you and your family have been hit so hard by this but at least you have all been formally diagnosed, that’s half the battle.
There are some good public resources out there for self-education, http://www.dinet.org is one that comes to mind.
Your symptoms vary but is there any commonality in the diagnosis, as in what genetic entity it is?
That is a good question. All of us have different symptoms with minor similarities. What made us figure it out, though, is that many of the stressors that trigger our symptoms are the same. Also, the treatments for the stress response systems are helping both my son and daughter, even though they have different symptoms. The only thing we know genetically right now is that our son (17) has a gene mutation causing his cells to have a methylation dysfunction. In my mind and with my knowledge, this is plenty of a reason for his body to go into a state of emergency (dysautonomia) over the years. Nothing is able to get through the cell walls, toxins are stuck inside his cells, mitochondria are distressed, and his nutrients (including sugar) are just floating around in his body. (His urine had hundreds of tiny particles floating around in it — likely the undigested food.) He also cannot eat anything at all that calls for an insulin response (sugar, fruit, some vegetables, some nuts, any grains, even Vitamin B, etc.). Anytime insulin is called for, he has a massive, massive reaction that lasts for weeks (depending on how much glucose was present). I am the same way with sugar, but my reactions are much more acute. Complicating my son’s illness is the fact that he also has a vestibular dysfunction (aggravation the autonomic nervous system) AND unbelievably, has neuro autoimmunity, attacking the same area of the brain (frontal lobe). His strep levels in his body are so high that his doctor has diagnosed him more specifically with PANDAS. This is a very complex case and thankfully, we have found most of the pieces to the puzzle (though we are not sure how they all fit together yet). Thank you for letting me join in on the discussion. You have no idea what a relief it is to talk with other people who understand.
My daughter has been diagnosed with Dysautonomia that is not pots at least not your typical pots. She has low blood pressure and faints with her heart stopping. Her tilt table test showed her pause was 30 seconds. Her fainting episodes only happen when triggered by anxiety. Ex. Getting a root canal at dentist. Giving a speech. Witnessing someone’s injury. Her episodes occur 1-3 times a yr. I believe Pots patients faint often & at any given time. She doesn’t fit this criteria.
Our dr recommends a pace maker & is referring us to Mayo Clinic. Mayo has us on a waiting list with an Automic Specialist. Mayo won’t give us an estimate of how long the wait list is:(
We wanted to wait on the pacemaker until we got a chance to talk to Drs at Mayo. Our own Dr said there is no guarantee the pacemaker will make any difference so it makes us skeptical. Wondering if others benefited from their pacemakers?
My daughter is 36 years old, a single mom with 3 kids, who has been presenting with symptoms of Dysautonomia since 2017. Each doctor she sees send her to someone else, or give her another pill to take. Cyclic vomiting, Barrett's esophagus, chronic diarrhea, etc, etc, etc, along with horrible migraines, stomach pain, and fatigue. She works for the University of Utah where she has been on the waiting list for the Dysautonomia Clinic for 3 years. Where do we begin to get her help??
Hello @cdhouns .. how difficult to have your daughter so ill, but i am glad you found Mayo Clinic Connect. We’re a group of patients and patient’s caregivers who try to help each other with resources, information, and tips we’ve learned from our own health journeys. But were not doctors so can’t diagnose or prescribe medications.
Here is a link to some information i found. Have you read this?
DINET Dysautonomia Information Network
Your daughter was diagnosed with dysautonomia in 2017—did any of the doctors start treatment?
As is typical with this diagnosis, she has only received symptomatic treatment. If her stomach hurts or she experiences cyclic vomiting, gastro rx zofran, reglan, etc. If she gets a migraine, then migraine meds. She actually works for Univ of Utah scheduling medical specialities. There is no coordinated treatment and a 3 year wait for Dysautonomia Clinic. Yet she continues to suffer
I know you said there is a 3 yr wait, but i cant believe it!! Is she on the wait list? Have you considered going elsewhere? A large medical center or a university teaching hospital? If you think you might consider Mayo Clinic, here is the information for the campuses in Arizona, Florida, or Minnesota .
Is this something you and she might think about?
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