Dysautonomia is ruining my life, no help from doctors

Posted by beccamarieg @beccamarieg, 4 days ago

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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@becsbuddy

@searcher1 @siosal You need to be careful when recommending medications. You don’t want to specifically tell someone to try a medicine. You are not a doctor and don’t know the person’s medical history or allergies. It’s best to say “this worked for me” or “ask your doctor about…”. Otherwise, your postings are great. It’s obvious that you put a lot of thought into what you say and really want to be helpful.

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I could write paragraphs about my B12 deficiency while taking B12 capsules. The sublingual B12 allowed for absorption and brought me out of it. I try to limit talking about myself while trying to help others.

I will unsubscribe.

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Hi,
With out knowing which Dysautonomia you have been diagnosed with there is no answer, just guesses. Dysautonomia covers a range of diseases involving the autonomic nerve. None curable but some symptoms are treatable. I have found with my particular Dysautonomia that stress levels cause mental health issues not the disease itself. If you can get past the shock and horror of having such a disease it can help. I tend to focus on the here and now and not so much on tomorrow, getting through each day as best I can. I have had to accept I'm just along for the ride, in doing so I'm more relaxed and manage to function.
Try the Dysautonomia international website to give yourself some insight.
Cheers

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@siosal

Hi
Its not medicine and is available to all in many places.
Also i didnt recommend, only asked!
I would only hope my question created curiosity.
Like you i agree non medical persons should not recommend medicines.

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You didn't even recommend B12. You only recommended sublingual instead of supralingal.
Your post reminded me to take B12. Thanks.

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Hah! I was referring to cbd but same applies!

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I read your post about having Dysautonomia and I’m wondering if anyone has ever spoken to you about having Stellate Ganglion Block Injections? I have had 7 to hopefully bring back my taste and smell from having Covid over 2 years ago. I still don’t have my taste or smell back, but what the injections did do for me are take care of my PTSD or anxiety. I am no longer jumpy and feel more calmness in my body. The injections are put into your neck in your parasympathetic nerves and may help you calm down. It might be something to talk to a doctor about and since none of yours seem to be listening, it may be time to find a new doctor. I wish you good luck and good health!

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@siosal

Hah! I was referring to cbd but same applies!

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What is ebd? I have also been diagnosed with dysfunctional autonomia.

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@cheyne

Hi,
With out knowing which Dysautonomia you have been diagnosed with there is no answer, just guesses. Dysautonomia covers a range of diseases involving the autonomic nerve. None curable but some symptoms are treatable. I have found with my particular Dysautonomia that stress levels cause mental health issues not the disease itself. If you can get past the shock and horror of having such a disease it can help. I tend to focus on the here and now and not so much on tomorrow, getting through each day as best I can. I have had to accept I'm just along for the ride, in doing so I'm more relaxed and manage to function.
Try the Dysautonomia international website to give yourself some insight.
Cheers

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Thank you. Your description of some of your symptoms, anxiety and stress applied to me. However, the medical profession still wants to ascribe my symptoms to an emotional condition. I'm on meds for anxiety and deal with the rest like you, one day at at a time. It truly helps me.

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@jmckellips

Thank you. Your description of some of your symptoms, anxiety and stress applied to me. However, the medical profession still wants to ascribe my symptoms to an emotional condition. I'm on meds for anxiety and deal with the rest like you, one day at at a time. It truly helps me.

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Hi,
I got tired of being told I had psycological problems steming from historical issues. I was to the point of believing them until I discovered it was induced by anxiety dealing with serious health issues. For the most part I manage it but periodically it still can bite me. Any hint I'm psyco because they can not find any other explanation really makes me mad!
Cheers

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@jmckellips

What is ebd? I have also been diagnosed with dysfunctional autonomia.

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Its CBD. a non hallucinogenic cannabinoid made from hemp .
Some are manipulated to be medicinal re like THC which is in Marijuana.
Perhaps you can do some research on it.
There is a medical marijuana in prescription form. I think it’s called marinol. My mom got it prescribed when being treated for nonhdgkins lymphoma

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@searcher1

I could write paragraphs about my B12 deficiency while taking B12 capsules. The sublingual B12 allowed for absorption and brought me out of it. I try to limit talking about myself while trying to help others.

I will unsubscribe.

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@searcher1. Please don’t unsubscribe! What you had to say was very good! I only wanted you to be more careful when talking about drugs.

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