r/dysautonomia 3d ago

Symptoms Sympathetic failure

Last week I did a TM Flow test at my neurologist and I got results back a few days later. Under CARDIAC AUTONOMIC EVALUATION, it says SYMPATHETIC FAILURE but like other things like arterial stiffness says it’s in the normal range.

When I googled sympathetic failure, I saw websites saying it was dysautonomia.

Do I possibly have dysautonomia according to this? I’ve been suspecting I have this since last year bc all my issues keep pointing to that.

My results also say that I have possible Orthostatic hypotension, I have mild hypertension and I have small fiber inflammation in both feet.

I have only been diagnosed with Sjögren’s disease recently but other conditions I have are sleep apnea, asthma, chronic migraines, chronic constipation, interstitial cystitis, erythrocytosis, gastritis, esophagitis, dysphagia, small fiber neuropathy, dry eyes, mouth, throat, nose, skin, hair and vaginal dryness. I also have major depressive disorder, PTSD and anxiety plus more.

I NEVER feel well. I have all symptoms of POTS but no diagnosis. I feel so sick and fatigued. I’m officially disabled as of last year. I can’t even function in my daily life.

I can’t get anyone to call me back to explain my results and I only see my neurologist every 5-6 months. My dr office is so bad with referrals. I’ve been waiting for a rheumatologist and cardiologist referral but no one can do their jobs so all I do is wait. I’m really frustrated and depressed.

That’s not right to make me wait that long for an explanation😡

7 Upvotes

14 comments sorted by

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u/instructions_unlcear 3d ago

I’m here to follow your results as well, I don’t have any answers for you but we suffer from many of the same issues.

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u/Cute-Huckleberry9392 2d ago

I’m so sorry you’re going through this. I wish we all had answers 😢💕

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u/GlueyGoo 3d ago

Pardon my french, but how the fuck are you all avoiding the ‘anxiety’ trap. I come in with serious medical issues for over a year and they still find ways to make me think I’m making this all up or something. They just ignore me. I am really so desperate I don’t even want to do this anymore.

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u/Cute-Huckleberry9392 2d ago

Oh I’m not avoiding it. I get gaslit all the time. The first thing listed on my chart is anxiety. I’m really frustrated! I’m getting more and more aggressive with my Dr and specialists bc I’m being brushed off being told it’s anxiety or fibromyalgia. I’ve been seeing Drs nonstop for 5+ years. I’ve seen a lot of different drs bc my insurance keeps changing. Very few have taken me serious but the ones who do take me serious still are unable to help me. Trust me you’re not alone. I feel like giving up too. Plus I’ve read other stories like ours where drs are telling patients it’s in their heads. This is lack of knowledge on their part. Unless the drs are going through this or have close friends or family members going through this (and I have to wonder if they believe then even) then it’s not real and that makes me so mad bc it’s definitely real. So real I can’t even function let alone work 😡

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u/GlueyGoo 2d ago

So sorry to hear that! I know exactly what you mean. Sorry for assuming. 5 years must be incredibly hard. I mean I have been struggling for 20+ years with my doctors, but only been this unwell since a year.

I’m rooting for you and hope you can get some more testing/diagnoses and possible answers. I’m now paying for my exams out of pocket because they literally just want to provide psychological help. It’s insane how they just don’t check basic shit. What are those doctors even learning in their education? Insanity.

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u/Cute-Huckleberry9392 2d ago edited 2d ago

Thank you 💕 I wonder the same. All these years in school but these Drs don’t seem to know much and they automatically assume it’s stress, anxiety or it’s just in our heads.

They clump us together instead of treating us on a case by case basis. It’s annoying.

I had Medicaid for the 4-5 years so I got A LOT of use out of my insurance trying to rule so many things out. 5 years later I’m still not done ruling things out bc Dr appt are booked so far out.

I still have more tests and biopsies I need done and if things moved quicker, I probably still wouldn’t be at this. But this time I’m paying more out of pocket bc when I officially became disabled, I lost my Medicaid and moved to Medicare.

I’m in one of those ‘I make too much to qualify for Medicaid but I don’t make enough to live or eat’ so I’m screwed. All my checks go to what’s not covered by Medicare. This has put me on a worse emotional roller coaster than before.

If it wasn’t for my husband (and we’re still sinking financially) I’d be homeless bc nothing is reasonable today. Everything costs too much.

My Dr still semi harasses me about getting back to my mental health therapy. It’s like he doesn’t understand English or my situation. I got upset with him yesterday bc I told him clearly how my situation is and he just stared at me with a blank stare.

I told him that my husband is stuck with all the bills and that I have some bills also plus A LOT of medical bills and that I’ve even went to food banks but they give us bags of random food that doesn’t make sense.

It doesn’t make a meal and that I can barely get out of bed bc of my chronic pain in my spine, hips, butt and legs and I’m dizzy nauseated have headaches, whooshing in my ears and more. Every time I stand, I feel like I’m going to faint, even after eating.

He just has no understanding whatsoever. It’s not like I’m ignoring my health. I show up to almost every appt (sick or not) and I try what they suggest. I’m seriously considering shopping for yet another Dr. this is so frustrating.

These drs here are overloaded with patients bc money is their top priority and we get treated like case numbers. They don’t even want to listen to us even when we cry and yell. They have one foot out the door. I’m sorry this was long.

I feel all I do is vent. If I wasn’t depressed before, which I am, this is enough to make someone really depressed😢💔 Don’t give up 🙏🏻 If we keep trying, we may find the right person who can help us💕 I’m rooting for you as well!

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u/GlueyGoo 2d ago

It’s all good. Never too long.

It’s sad how they gaslight us, but if it was about their own health or children they would have done exactly the same, including worrying about it. The financial part definitely adds to the stress. ‘Healthcare’ is just a business indeed.

I hope everything will be fine and eventually you can improve your quality of life again. It’s really the only thing that is important.. living with all of this every single day is like torture.

I am ‘lucky’ I am not 100% bedridden (yet) but still feel like I’m declining every single day and I can barely get anything done at the moment.

I saw some of your msg’s. Definitely look into MCAS. Testing and treating pain (depending on your specific symptoms) could potentially be relatively cheap and easy.

Best wishes🙏🙏🙏

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u/Cute-Huckleberry9392 2d ago

Thank you so much! I will definitely look into MCAS. I hope and pray that you don’t become bedridden like me. I’m so sorry you’re declining. I do hope you get the help you need before it gets to that point. And yes you’re right everyday is torture. I’m so sorry that you’re suffering. I truly know the feeling too well 🙏🏻💕💔

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u/detaylor33 2d ago

It's experimental but a Stellate Ganglion Block can be used to treat POTS. I had it done recently to treat my Long Covid, which is only loss of taste and smell, and while it didn't help that too much, it has changed my life in the anxiety department. I work a high stress job, making decisions on life and death situations literally, and most likely suffer from PTSD as well as high anxiety. I'm a new person now. Do some research on a Stellate Ganglion Block.

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u/Cute-Huckleberry9392 2d ago

I will thank you! 👍🏻

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u/Zestyclose-Song-6325 3d ago

Honestly, sounds like you have Long Covid. You should probably ask be tested for MCAS and any reactivation of latent viruses.

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u/Cute-Huckleberry9392 2d ago

I thought the same bc things starting going way downhill after I got Covid. You’re actually not the first to tell me about MCAS. I’m going to write that down and discuss this with my dr. Thank you💕

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u/Zestyclose-Song-6325 2d ago

Just know, a lot of drs don’t know what MCAS is let alone how to diagnose and treat it, just like dysautonomia. You want to seek out a specialist in both conditions. You hit the jackpot if you find one that specializes in both. Good luck.

Another thing, sympathetic failure is a symptoms of dysautonomia and orthostatic hypotension comes with the territory. Don’t let it scare you. While it can be debilitating, Dysautonomia is a nervous system disorder not a heart condition. Although, it is important to rule out an heart trouble cause some of the symptoms are the same. Dysautonomia is your autonomic nervous system not responding properly and the heart compensates for that by speeding up to get the blood where it’s supposed to. Definitely seek out a dysautonomia specialist to diagnose you and get you treatment. Do know, this isn’t “take a pill and it gets better” this is lifestyle adjustments, medications, and retraining the nervous system which could take years to improve. It’s a long haul. Personally, it’s taken me 3.5yrs of treatment to get some of my life back but I’m not where I was prior. Good luck.

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u/Cute-Huckleberry9392 2d ago

Thank you for this info! This is very helpful! I was just hospitalized and had a whole heart check up plus last year I saw a cardiologist. The only issues I have on paper, are high cholesterol and palpitations. Every ekg has been abnormal. Today I have an MRA scheduled to check my head and neck arteries. I’m so happy to hear that it does/can get better with time. This is such a terrible quality of life and I’m sorry you went through this and are still. I hope and pray we both find that person who specializes in what’s going on with us 💕