1. < Autoimmune Diseases

Dysautonomia is ruining my life, no help from doctors

Posted by beccamarieg @beccamarieg, Mar 7 4:03pm

I am struggling with Dysautonomia that just popped up last October 2024. My health and mental health are declining rapidly. My doctors are not knowledgeable with this autoimmune and I need help. I have been through calcium channel blockers, currently on a beta blocker and it is making me deteriorate faster. I am in so much pain and have been going through insomnia for the last 3 months. I've tried almost every herbal supplement for sleep and nothing helps, just makes me worse.
I'm at the point where I don't want to live like this anymore.
Looking for some insight, ideas..anything.

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beccamarieg | @beccamarieg | Mar 12 12:17pm

Does anyone out there know an actual doctor who knows and practices treating Dysautonomia? I don't care where it is. At this point in my life I am willing to travel anywhere in the states to get the help that I so desperately need.
Thank you all in advance for your response.

REPLY
cheyne | @cheyne | Mar 12 12:56pm
In reply to @artemis1886 "Do you have the seizures it causes? I do when I go into bradycardia in my..." + (show)
@artemis1886

Do you have the seizures it causes? I do when I go into bradycardia in my sleep I bit my tongue. Woke up with blood all over my face. This is caused by the dysautonomia. Which also causes paralysis and you can die. My electrophysiologist has all ready told me what to expect. Most people live 8 years from the time diagnosed. I am on year five and tts horrible. There’s nothing that can be done,

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Hi,
I wondered how you were getting on, my thoughts are with you.
I don't think any timeline can be attributed to Dysautonomia, as it pretty much depends on when some bright spark diagnoses it and doesn't pass it over, or which particular disease it is within Dysautonomia and how quickly it developes. My health records show the first signs 27 years ago when it was just starting for me. A great pitty nobody recognised it as Dysautonomia back then or was it even a recognised diseaes back then. I guess it doesn't matter now as it is here and now I'm dealing with it.
Take care.
Cheers

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beccamarieg | @beccamarieg | Mar 12 1:44pm
In reply to @becsbuddy "@beccamarieg Finding the right doctor seems almost impossible, doesn’t it. Here are some resources you can..." + (show)
@becsbuddy

@beccamarieg Finding the right doctor seems almost impossible, doesn’t it. Here are some resources you can try;
NORD. National Organization for Rare Diseases. https://rarediseases.org/
GARD Genetic and Rare Diseases. https://rarediseases.info.nih.gov/ The organizations have similar names but are totally separate. They both have lists of doctors who specialize in autoimmune diseases. The Autoimmune Association. https://autoimmune.org/autoimmune-awareness-month/ Has lots of information and probably a doctor list also. You may have to make a special trip to see one of these doctors, but . . ..
I know that tomorrow is Saturday, but try looking at the internet sites to see what you can learn. Please stay in touch. I’d love to know what you learn!

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Thank you for this information. I will post again an update as soon as I can.

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beccamarieg | @beccamarieg | Mar 12 2:04pm
In reply to @seniormed "Have your doctors come to a conclusion about the cause.? Is yours from autoimmune disease or..." + (show)
@seniormed

Have your doctors come to a conclusion about the cause.?
Is yours from autoimmune disease
or genetic. What symptoms are they
Trying to relieve.?

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No.
Genetic testing is a 2 year wait. They are assuming autoimmune but also Genetic.
No current medications at this time other than percocet and Alprazolam.....

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 12 4:26pm

The information that I gave to @beccamarieg is in the following comment:
https://connect.mayoclinic.org/comment/1252896/
It tells the organizations that keep lists of doctors who specialize in autoimmune disorders!
Check it out!

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joansmurphy | @joansmurphy | Mar 13 9:59am
In reply to @beccamarieg "I've seen 2 now. Both have disregarded me and my symptoms. But, my ANA is still..." + (show)
@beccamarieg

I've seen 2 now.
Both have disregarded me and my symptoms.
But, my ANA is still positive.

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I would keep looking for a good rheumatologist. I feel so bad for you. Feeling your worst & having to search for help is awful.

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artemis1886 | @artemis1886 | Mar 14 8:33pm
In reply to @beccamarieg "I was having tremors in the beginning. Also would go into bradycardia when going to sleep...." + (show)
@beccamarieg

I was having tremors in the beginning. Also would go into bradycardia when going to sleep. "Seizure like activity" was what my PCP has told me.
What you are experiencing sounds terrible. I am sorry you are going through this.
I wished we were given better options to actually live a better life.
Because all I am doing is surviving, nothing else.

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That’s all you can do. It’s frustrating when your hands shake so bad you can’t cut up your food and feed yourself. I have to carry a cup with a lid otherwise I spill it or I grip the cup so hard I break it and the drink goes everywhere. Bottled water has to have a lid that you squeeze no lid uhh. I sat down and listed everything each one causes motor neuropathy, sensory neuropathy, SFN, and dysautonomia and cardiac autonomic neuropathy. The kicker for me is the severe seizures that I hav in my sleep waking up with blood all over me and the &act it causes paralysis. No neurologist told me about paralysis.
My seizures are tonicclonic seizures.

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1 reply
artemis1886 | @artemis1886 | Mar 14 8:40pm
In reply to @beccamarieg "No. Genetic testing is a 2 year wait. They are assuming autoimmune but also Genetic. No..." + (show)
@beccamarieg

No.
Genetic testing is a 2 year wait. They are assuming autoimmune but also Genetic.
No current medications at this time other than percocet and Alprazolam.....

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Does the alprazolam help with the tremors?

REPLY
moljay | @moljay | Mar 16 7:10pm
In reply to @artemis1886 "That’s all you can do. It’s frustrating when your hands shake so bad you can’t cut..." + (show)
@artemis1886

That’s all you can do. It’s frustrating when your hands shake so bad you can’t cut up your food and feed yourself. I have to carry a cup with a lid otherwise I spill it or I grip the cup so hard I break it and the drink goes everywhere. Bottled water has to have a lid that you squeeze no lid uhh. I sat down and listed everything each one causes motor neuropathy, sensory neuropathy, SFN, and dysautonomia and cardiac autonomic neuropathy. The kicker for me is the severe seizures that I hav in my sleep waking up with blood all over me and the &act it causes paralysis. No neurologist told me about paralysis.
My seizures are tonicclonic seizures.

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Your posts and others have helped me deal with dysautonomia (without POTS) but with OH…. with syncope once but somethings it sets off severe fluctuations in BP. Eating any kind of food can knock me for a loop as small meals make me feel super bloated and full. It’s debilitating but I’m at a bad time for severe pain in my pelvic area and colon, hence searching Mayo Clinic and now I know I’m not alone. The chronic constipation seems to have upset the whole tract. Everyone has their story and it must be so baffling for doctors. I was diagnosed at the Kaye Edmonton Clinic in Alberta, Canada. Thanks again for all your posts.

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