Don

I had general anesthesia when I had my thyroid totally removed. I have autonomic neuropathy. I had to fast with nothing to eat or drink after midnight with only a small glass of water to take my medication. The surgery was fine. They had trouble waking me. It took over an hour. They had to use several medications to get me coherent. I was very dizzy and disoriented. The doctors monitored my vitals the whole time. Before surgery I met with the nurse for my preop appointment. We discussed my neuropathy and what it does to my body including cardiac and pulmonary issues. They spent a lot of time with me. I also had to get clearance and physicals from my cardiologist, neurologist, and primary. I brought the surgeon the records. Back to my surgery, there are meds the anesthesiologist can give you during your procedure to control things like your BP and HR. I have a Brady/Tachy rhythm. This was controlled during surgery. They monitored constantly. I actually woke up with a small bruise on my arm from the BP cuff. I did stay the night in the hospital for observation due to high BP. They gave me epi to help me wake up amongst other things and my BP went to 180/120. I think it scared the doctors. I had surgery at a naval hospital and they admitted they don’t see many patients with my condition. They were able to treat it with IV meds to bring it down. By the next morning, it was normal and I went home. Pretty smooth.

Hi all. I got my LINQ placed this morning. The lidocaine injection was the worst part. The actual placement was easy. I got a few stitches. Overall, not too bad. Now I want my cardiologist to see what I see. When I described my events, the general consensus was that I was having what sounded like Brady/tachy syndrome. They also thought I was having short runs of SVT. We’ll see in time. Now I just want to catch it.

I think I’ve had that done too. Is it called a sitz marker test? I had to swallow a pill and they took pictures as it traveled through my GI system to check motility. I had it done years ago. I also had a gastric emptying test for gastroparesis last year. They didn’t think I had it at the time but my symptoms have worsened. Neuro thinks I do have it. I haven’t been to PT. They offered but it was over an hour away from my house. I don’t work due to disability. But my wife does. I stay home and take care of my kids. So it’s hard for me to get there to PT several times a week. Also being on disability I couldn’t afford it. Do you also struggle with continence issues? I hate it. Due to my neuropathy I struggle with bladder and bowel. It’s miserable. I sometimes go to an incontinence forum but when I talk and ask about autonomic dysfunction I get no responses. Nobody knows what I’m talking about. I don’t feel welcome on places like that.

I had my tests on all my meds. It wasn’t safe to stop them. My TTT was normal as was valsalva. QSART was abnormal. I had my tests at Mayo. The general consensus was that my meds were skewing the results in such a way that it enabled them to pinpoint a cause to my autonomic dysfunction. I had lots of symptoms. I was diagnosed with autonomic neuropathy from the sheer weight of all my symptoms. My disorder is caused by my medication. It’s rare and complicated.

Hi Kim. Yeah the pelvic floor issues don’t create the most ideal situation. But it’s manageable. Mayo did a lot of testing on me before. So they have all the records. I asked my neuro who diagnosed the GP to send me back there. I’m afraid though with my insurance (military) that they’ll send me to the naval hospital. I had surgery in the naval hospital to remove my thyroid in May. I had complications from my autonomic neuropathy. They told me that they don’t get many people like me. It’s not a very big hospital like Bethesda or San Diego. So I’m not sure if the naval hospital is equipped to deal with my disorder. So I’m hoping I’m able to go back to Mayo.

I think I mentioned in my other thread that my EP is putting in an internal LINQ monitor on Monday. He didn’t trust my Apple Watch 100% and wanted more information. He said the devices are good but still have their flaws.

I’m getting a LINQ device. I researched it. It looks promising. Anybody have any experience with these?

Hi all. I talked to my EP this morning. He agreed to an implanted device. I think my diagnosis is Tachy/Brady Syndrome. I get my device next Monday. I’m kinda relieved, kinda nervous about what it shows. But I want to know. This is all a bit overwhelming. 😥.

I have nerve damage to my pelvic floor causing spasticity. It causes some issues for me. I also have gastroparesis causing problems with my GI tract. It’s a lose/lose situation. I was just diagnosed with GP recently and am waiting to see my gastroenterologist. I live an hour from Mayo Jacksonville. Mayo did all my testing before. I’m trying to go back. My PCP said it’s treatable. I’m just waiting on my referral. Can anyone relate?

I get dry mouth from medications I take. Dry mouth reduces saliva which is necessary for dental health. I used to take anticholinergics (ditropan) for bladder issues thanks to my autonomic dysfunction. 😔. But I can’t anymore because that and my lithium damaged my teeth. I tried to take good care of them but I ended up with a lot a cavities. I’ve put about $1500 into my teeth in the last couple years. I know others have it worse.

My wife is actually a cardiac nurse on a telemetry floor. I showed her my heart rhythm on my monitor...it’s like chaos. Up down up down....

I’m having random runs of tachycardia. My HR can jump from 50-175-70 within a very short period of time. I also have bradycardia down to 30. That’s the lowest I’ve seen. Highest is 200+. My neuro and PCP are concerned as am I obviously. Cardiology mentioned SVT and IST. Some other acronyms I don’t recall. My neuro and PCP wanted me to inquire about an implanted monitor device. I wore a holter for 24hrs but it only showed the bradycardia, some PVC’s and extra beats. I didn’t wear it long enough. My other doctors want more data. I have an appointment with cardiology tomorrow. Im going to meet with the PA and EP to discuss the device. To those of you that have such a device, how did it go? Thoughts and experiences?

I saw Mayo in Jacksonville, FL. It was a good experience. I saw three specialties. But on different dates. The appointments couldn’t be on same day. Here in FL, there is a hotel on Mayo property but I’m pretty sure it’s expensive. I was seen by Mayo for about three months.

I don’t find it causes me any more anxiety. I check it every now and then but not all the time. If things get really squirrely you can set it to alarm at you. Mine picked up sustained HR over 120 and it didn’t register any physical activity.

Anamaria, Likewise. I don’t see my cardiologist until July 24th. I actually see the PA. She works for the EP. But the day I see her the EP will be there as well so the three of us can talk. I just want to know what’s going on. Since I got my watch, I’ve seen my HR jump from 50-185-70 within a few minutes. I’m not physically active. My watch knows this. My device is giving me good info. I also have a pulse ox and good BP cuff with Bluetooth to my iPad/iPhone. I can bring this to my doc.

I have a med alert sport bracelet. I got it from MedID’s. It’s relatively inexpensive. It has my name, my primary diagnosis which would be pertinent to medical personnel in an emergency, and my doctors name and number. Plus see other side with my wife’s name and number. Thankfully, I’ve never had to use it. I asked my brother in law what to put on it. He’s an EMT. I also have all my medical info in the emergency app on my iPhone.

I have something very similar to what is being described. For about a year I have described sudden shortness of breath. Almost like I’m panting. It comes on very quickly but I’ve never been able to properly describe it to my doctors. They have no answers. Recently I got an Apple Watch. A few days ago, I had an episode. My breathing sped up very suddenly. This time I was wearing my watch and it started alarming at me. Within about 10 seconds, my HR went up from about 46 to over 150 with no physical exertion. And my app caught it. It took over half an hour to get down below 100bpm. I called my doctor to tell them what happened. My cardiologist wants to see me next week. I had a halter monitor (24 hr) last year. They want to repeat it for 2 weeks. My neuro mentioned a loop recorder. I’m going to ask about this. My cardiologist said I could be having random occurrences of SVT or IST. Doesn’t know. If that’s the case, they mentioned being treated with Corlanor and a pacemaker....all this makes me a bit nervous.

I have OAB and urge incontinence secondary to autonomic dysfunction. The nerves in my pelvic floor don’t work properly. I get bladder spasms but don’t have IC. I have been through a dozen urology tests. I have tried anti-spasmodics like ditropan. I actually took it for 2 years. It was found on EKG that it was effecting my heart rhythm. So I had to stop it. Talk to your doctor. They may be able to help you.

SammyJo, Did you ever get in with Mayo? I saw Dr. Cheshire in June. I had my appointment scheduled back in mid-March. I had to wait around 3 months to get in with Dr. Cheshire. I had my neuro battery of tests that day with labs. Due to co-morbid conditions I had to come back and see other specialists later on. I'm actually having a follow-up appointment with GI next week. It all started with Dr. Cheshire.

I've been at Mayo in FL for the last 2 weeks for GI appointments. I had a GI doc outside of Mayo that tested for a few things but he just brushed me off. I told him all my symptoms and that I was incontinent and his reply was just "we'll take some fiber, that should help". Then he walked out without further discussion. As far as Mayo goes, they read my previous GI records from my other doc and they weren't satisfied. My Mayo GI said she felt like the other guy didn't even try. The tests I'm doing currently for Mayo are things that have never been done with me before. Mayo is being extremely thorough. Today I had a gastric emptying test, I'm also due to have an upper endoscopy with dilation. Wednesday I have more tests. Then I see my GI for the results. From what I gather, the docs are finding things about my body that were previously unknown. My overall experience has been positive.

My PCP wants me to try amlodipine (Norvasc) for my hypertension. I'm currently being titrated off metoprolol because it was causing a bradycardia (or at least contributing to it) and my elevated BP wasn't controlled. She said it could contribute to orthostatic hypotension. Not sure how this is gonna play out?

Hi. I am diagnosed with autonomic neuropathy and am currently receiving care from Mayo (FL). My neuro is Dr. William Cheshire. I have received great care so far. Dr. Cheshire has been pretty good. He didn't have all the answers but he was good at referring me around the medical center to see the specialists I needed to get the answers I was looking for. With the collaboration of all my physicians, I have a diagnosis (which I didn't have before) and an answer as to what caused my illness. I am currently undergoing a work up for chronic GI issues. I had several tests yesterday and have several more next week. It is very nice to have all specialties under one roof. So far, I am pleased with my care. My case is extremely complex.

Kim, There are 4 types. Cyclothymia is the mildest marked by slightly elevated and/or depressed mood. I have type 1 which is the most severe. I am essentially unemployable. I collect disability compensation from the VA. It helps pay my bills. My wife is employed though. So that really helps as well. She has good, stable employment. As far as medication goes, I take it as directed. I don't do anything that could lessen its effectiveness. I have maintained stability for quite some time. The medicine that caused the nerve damage is called Geodon. I no longer take it. But alas, the damage is done. I don't know if it's going to progress further.

No problem Kim. Hope I was of some assistance.

Hi all. I am having some anxiety surrounding my autonomic dysfunction. After all of my tests, my diagnosis is autonomic neuropathy secondary to medical treatment. Also known as "iatrogenic". It's very rare. I have type 1 Bipolar Disorder and from all the medicine I've taken, I have developed nerve damage. It can happen in some cancer patients as well. I met with my neurologist after all of my tests have been completed, I've been very busy as of late going from specialist to specialist, and my neuro examined all of my results. Bottom line, my neuropathy has no known cure. I messaged my neuro asking her about prognosis and what I can expect in the future. Makes me a little nervous. I should get her answer within the next couple days. I have anxiety as well and my mind is running 90mph playing out "what-if's". I know I shouldn't do this as I don't even know what I'm dealing with. So worrying doesn't solve anything. I try to stay off Dr. Google as that does not help either! I guess I'm just looking for a way to vent my concern.