Does anyone have Autonomic Storms

I want to acknowledge your suffering. I currently have sensory PN which seems bad enough but am very afraid of developing autonomic symptoms. What you are going through seems more extreme than I have ever imagined. Yet I doubt that you are the only one. My heart breaks for you and I pray that you get some relief from this horrible condition.

Thank you so much for your kindness. A large% of PNeuropathy patients also have autonomic neuropathy. The pain of PN is terrible beyond description but with AN it’s a whole next level terror. A lot of folks don’t know they have AN because the signs and symptoms mimic each other.
Hospice has given me as much morphine as I need and norco along with clonazepam ( talk to your Dr. As them to put you on clonazepam at night and this will help with spasms, charlie horses, and pain) Valium, for pain.
Today I’m doing ok and my pain is at an 8.
I hope you can get some relief. One of the best pain killers is Norco. It stops or lowers nerve pain.

Have you had one or both of your adrenal glands removed or been diagnosed with Addison's disease (adrenal insufficiency)? My PN in feet/legs seems to be caused by genetic mutations that also caused my adrenal insufficiency. I belong to a support group of people with adrenal insufficiency, and in most cases, their adrenal glands were destroyed by autoimmune attack. From time to time, they go into an "Addisonian crisis" which means their electrolytes plummet, their blood pressure drops, they can vomit, have a heart attack or stroke, and they have pain. It can be fatal if not recognized by the ER doctor, and hospitalization is required until they get their electrolytes under control. Addison's can be controlled by managing your adrenal hormones, particularly during periods of physical or emotional stress. Diagnosis is done by a few blood tests. I don't have Addisonian crises only because even though I have Addison's disease, it wasn't caused by autoimmune attack, and I still have one adrenal gland left, albeit it is only working at about 50% functionality due to my genetic mutations. Just a thought - maybe there may be a way to get your 'episodes' under control. Best of luck.

Thanks for your note. I have not had an adrenal issues and was tested at the University of Michigan.
This is hereditary. My son has this, my twin brother was just diagnosed with neuropathy. They 2 other brothers have neuropathy. Don’t know what side of the family this came from but I suspect it was my dads side. At my neurologist she said she has 4 Frattini’s that have neuropathy.
I hope this gives you the answer.

It's good you don't have Addison's. It sounds like the the responsible genetic mutation(s) is/are already clear. I hope your doctors are able to identify some sort of gene therapy or protein replacement therapy that could correct or replace your mutant SDHB (and any other mutant genes) so you can get some relief. FYI, my mutant SDHB is hereditary and, together with another mutant gene FBXL4, is responsible for my peripheral neuropathy and Addison's (and possibly my seizures). But every case is different, and treatment seems to require a custom-made approach. Praying for a good outcome for you.

I’m so sorry to hear you have Addison. I pretty much don’t know hardly anyone that is healthy anymore. In USA we have thousands of genetically engineered plants and animals. Our bodies do not recognize this food and it’s poisoning so many people. I believe this is why we have so many prevalent diseases. Canada
Only permitted 4 things to be genetically modified. 3 are oils ( Canola, Safflower…) the only other one is corn.
I hope you get some good days where you can enjoy some of your life.
-Mark

It may not be the same, but loud noise over a period of time and exposure to fluorescent lights in stores really sends me amok. Same with failing to hydrate, eating processed foods and such. I use a lot of calming methods, including EFT tapping, intentional breathing and other methods. Movement like stretching ala Yoga, Pilates also calms the system.

I have some form of full body neuropathy. I believe it was caused by abusing alcohol. Anyway all of my muscles have atrophied and I'm weak and I have have issues with my heart rate and some trouble breathing at times. What you are going through sounds really tough. I believe things will get better for you and you should do your best to remain positive and envision a healthy brighter future for yourself. Have hope that things will get better. Have you tried any holistic treatments like chinese medicine or acupuncture, etc? There's a lot of different types of treatments out there.

You sound just like me with autonomic neuropathy. The treatment varies from small fiber sensory. I know cause I have both.

I am happy my health is quickly declining. Once you die it just like sleeping. I’m not going to know I’m sleeping just like at night. I’ve been dealing with such debilitating pain, I want this to end. It’s been about l. Mine started in 2005. It’s just been too long. I know I’m dying and I’ve went through all the grief stages. So now I’m trying to enjoy the time I have (that’s if I can feel good enough to get out of bed). I have my 4 Husky’s that I love and they have really kept me going) by helping me have fun or relaxing. I’m ADHD so focusing has always been an issue!lol

Last night every few seconds my heart went from 125-68, 109-74-100-70-109-120-64. It did this for hours. I called hospice and basically they can’t do anything. So I took a ml of morphine and the 10mg of Valium and I had already taken my norco and it was 2 hours after. But the morphine and Valium worked. One day I know this will happen and it won’t stop and that will be that.

I try to talk to my boys every dad so that they will have there fond feelings after I’m gone.

I’ll keep trying to be positive! Thank you

-Mark

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Something I'm trying to do more when I find myself in a negative state of mind because where my life is and my current health symptoms is try to have acceptance for now. When the anger, anxiety and despair shows up I try to feel love. And then send love to the uncomfortable feelings in my body. I want to be more happy and accepting of my situation and reading your story helps me by knowing there is someone who is really going through some stuff and is still hanging in there and is accepting and still enjoying every moment the best you can. Thanks for being strong and an inspiration. You've got huskies I'm jealous. I hope to have a dog and a cat in the future. Please feel free to message me just to have someone to talk to through text if you want. And we can share our fun experience together. Lol.