Don

I have some mental health conditions that are pretty severe. I take multiple medications to treat them and they cross into one another overlapping symptoms making it hard to pull them apart and decide what disorder is causing what effect. I have been hospitalized around 15-20x. I've lost count. I have some side effects from the meds that are unpleasant. My autonomic neuropathy has been suggested to potentially be the result of treatment for my disorders. It's a high price to pay for stability. What happened to me is so rare some medical professionals find it hard to believe. My medication causes dry mouth, chronic gastrointestinal troubles, I have trouble with concentration and memory, and I'm also incontinent. It makes me sad to say that I've worn pads (diapers) for about 10 years. I do not even remotely trust my body anymore. My mental illness side effects are crossing into my neuropathy effects and it's hard to separate them. They are so numerous. My urologist offered me the interstim but I declined because it was not reliable enough for me to take the risk. Those are my major conditions that I face. My health conditions are extremely complex. Most doctors I've encountered can't make heads or tails about what I deal with because it's so complicated.

I know all those meds well. I've been on every single one of them and probably a dozen more. I'm actually allergic to abilify. It made me want to tear my skin off. Itch isn't the word for it. I missed out on a lot of memories too. No recollection of certain time periods. Depakote caused ataxia for me. One doctor hypothesized that my neuropathy could be iatrogenic (stemming from medical treatment). If this is true then the drugs that are keeping me well could potentially...well. I won't go there.

The sleep study as far as apnea goes was normal. However, as I mentioned, the disorder showed on the O2 oxymetry that I desaturated in my sleep. Which lead to further evaluation by pulmonology leading to an asthma diagnosis. I do not have apnea. But do have breathing disorders.

This is the synopsis I'm taking to Mayo. If this is an autonomic neuropathy, it has been untreated for 8 yrs. Until recently, no doctor has taken this seriously. The VA completely ignored me and said it was all in my head. It's hard to argue with physical evidence from multiple exams. But they did. Enuresis Overactive Bladder / Frequency / Urgency / Overflow incontinence (diagnosed by urology 2009-2011) IBS D&C / bowel incontinence ( gastroenterology) Colonoscopy and Endoscopy, 2011 Peripheral Neuropathy diagnosis 2011 Dysphagia / Nausea / Early Fullness / Loss of Appetite / Bloating / Heartburn (2nd Endoscopy, 2016) Hypertension / Tachycardia / Chest pain / Tremors / Tinnitus Asthma / Past history of Nocturnal Hypoxia (Remission) Orthostatic Intolerance 2 Episodes of Syncope Hypothyroidism/Hyperthyroidism (Remission, 2015?) Hot/cold intolerance Joint Pain (hips, knees, burning sensation in feet when standing or walking for excessive periods. In the past, I've used a cane to take the pressure off my legs) Tingling/Numbness in fingertips Exercise intolerance – feeling of intense chest pain and shortness of breath Periodic times where I stop breathing (almost like I’m unconsciously holding my breath…lasts for about 15-20 seconds) Causes shortness of breath and rapid breathing I'm hoping Mayo will listen. Mods, sorry for the double post. I couldn't figure out how to combine the two after submitting.

I take 900mg of Li per day. My blood levels are normal. I used to take 1350mg a day, but I got Lithium toxicity because I got overheated in Disney World. Neurologist was concerned I wasn't sweating. I became dehydrated. Left DW on Sunday. Had blood levels (routine) on Monday. I got a phone call Monday night saying my levels were 2.2. Which could be fatal and lead to more nerve damage. People do die from levels that high. I showed no symptoms of toxicity. Anyway, I ended up in the ER for several hours getting IV fluids to flush the Li from my system. They released me that evening and told me I was extremely lucky! Had I not got that phone call at 8pm Sunday night, I take my night meds at 9p, I could have taken my night meds and elevated my levels to an even higher fatal level without ever having known. So after this scare, my psychiatrist lowered my Lithium dose. I take another mood stabilizer called Lamictal which actually doubles as an anti-convulsant used to treat seizures. So between those two medications, I have been stable for quite some time. To get to your question, I'm not sure how POTS is diagnosed. I know that without my metoprolol my blood pressure and HR go way up. Tachycardia goes into the 100's. Before I got put on a beta blocker, I had an incidence in the doctors office where my blood pressure dropped ~40 mm/hg sitting to standing. Also my HR increases by about 15-20 bpm upon standing. But I have other symptoms you guys with POTS aren't describing or not sharing. Some of them are rather embarrassing.

I had a sleep study done a few years ago. They also did a overnight oxygen oxymetry. The test showed that I did not have sleep apnea. I would snore and wake up gasping for air and would be tired all the time. I was diagnosed with nocturnal hypoxia. My O2 sat was dropping below 85 for more than half an hour for periods during my sleep. I was placed on oxygen at night, 2.5 L/pm. Also, when my pulmonologist discovered this, I was referred to a pulmonary function lab where upon further testing it was discovered I had asthma adding to my symptoms. So apnea didn't explain my symptoms, but there were other factors involved leading to a positive conclusion. Once placed on oxygen, my situation resolved.

I am afraid that the medicine I take will alter the results of the exam. I take Lithium, which is a salt, for bipolar disorder. It's not something I can skip out on. If I skip doses of medicine, it can be dangerous for me and I could be hospitalized. If I don't take my metoprolol my HR could go <100. So I'm not sure what Dr. Cheshire is going to want me to do.

Thank you all for your comments. Managing my condition is still new to me. There is so much I don't know. I check this forum a few times a day. I learn new things from you guys all the time. I am diagnosed with autonomic neuropathy. I'm waiting to see Mayo (FL) in June. Hopefully they will give me answers. One of my fears is that the exam will be inconclusive and I'll be left with no idea as to why I have all these conditions. There's a lot. I live in a world where I'm constantly thinking "what's next?...what other part of me is going to become dysfunctional?". My appointment is a little over a month away. I am so ready. I'm almost to the point where I don't care what they do to me as long as I find out what's wrong. On a side note related to my original topic, I told my dentist about my experience. I don't know if she knows what autonomic dysfunction entails. I told her how my HR monitor hit 193 then errored out as in it wouldn't go any higher. It scared me. She told me if it happens again to go straight to the ER. My mom is a nurse. I told her about my ordeal. She told me I never should have left the dentist. I should have made them aware and asked for help. She mentioned that I could have gone into A-Fib or SVT. I told my family practice doctor and my neuro and they just said to monitor my BP and HR and drink water. I took my metoprolol dose that evening at the scheduled time and my BP went down to 114/83 with a pulse of 56. I learned the hard way about the dangers of epinephrine to people like us.

I'm still learning about my condition. I went to the dentist today for a crown over where I had a root canal about a month ago. Before doing the temporary crown placement I was bleeding a lot and the dentist gave me a gel on my gums to stop the bleeding. I didn't know it had epinephrine in it or that this may be bad for me. If someone could clarify I'd be grateful. Anyway, I monitored my HR throughout my procedure on my Fitbit and it stayed around 85. When the procedure finished, I stood up and immediately felt odd and clammy. From the time I walked from the exam room to the desk to check out, my pulse hit 193 bpm and my Fitbit started flashing. Didn't know it would do that. Anyway, I got in my car and sat for a minute and my pulse went below 100. I drove home and checked my BP and it was 150/114. I started drinking water and took my blood pressure again in an hour and my BP was 114/90. My pulse has been hovering around 100 since my procedure. It now 6:20p. My appt was at 11 this morning. I sent my neuro a message to ask her thoughts. My wife works at a hospital on a cardiac floor and told me to notify my doc. It was a new experience for me. I've never had that happen.

I'm really anxious about going. I'm ready though. The VA neuro are the ones who dismissed me. They didn't even test me. I came to them with multiple complex conditions and they basically said it was all in my head, even though I had physical evidence from prior exams with providers outside the VA system. I don't see them anymore. The only reason I go to the VA is for my disability claim issues. I am a military retiree with private insurance so I can go where I wish. I went to a well respected neurology/neurosurgery group at a large teaching hospital in the city in which I live. Evidently my neuro thinks I have something going on as I was diagnosed with autonomic neuropathy on the first visit and hence referred to Mayo. So I'm trying to think positive. If my doctor didn't think I had a case, she would have dismissed me like the VA. But she didn't. I'm hoping Dr. Cheshire can give me further information. From what you say, it sounds like it's going to be a worthwhile visit.

Hi Kim. I am seeing Dr. Cheshire. I'm in the process of collecting all of my records from previous specialists to bring to him. The only problem is some of them are 5-6 years old so Mayo may want to repeat exams. I am excited about seeing Mayo but at the same time I'm nervous because I don't know what to expect. My referring neurologist wanted a TTT, Qsart, and valsalva I believe. But I have such a wide range of symptoms, I'm unsure what else they are going to do.

Hi all. I'm Don. I'm in the new diagnosis phase and still learning a lot about dysautonomia. You all are schooling me and I'm trying to keep up. I saw my new neurologist for the first time about 2 months ago. I was diagnosed with autonomic neuropathy on the first visit. I have many symptoms. Some of which are shared by users of this forum from what I've read. I don't feel so alone. I have been seeking a diagnosis since about 2009. I have seen many doctors over the years. Some of whom have not taken me seriously and dismissed me. I have bipolar disorder so some doctors see my psychiatric diagnosis and think they have it figured out before even meeting me. I'm a veteran and formerly saw the VA. With all my symptoms, and there are many, they didn't take me seriously so after years of bouncing around from specialist to specialist, I sought care elsewhere in the private sector. That's where, on the first visit, I was diagnosed with autonomic dysfunction and immediately referred to Mayo in FL. I'm very much looking forward to my appointment. I am a little anxious about what they are going to do to me because my symptoms are broad. So I'll just have to wait and see.

I took prednisone about a year ago because I was having trouble breathing. I took it for like 5 days, finished my dose, and then had to take it again because I still couldn't breathe. Ended up in the ER twice. That medication makes me feel horrible. Like I want to jump out of my skin. It increases my heart rate and makes me feel really jittery. So I can understand where your coming from. In the end my dose had to be stopped because it was affecting my mental health. What you describe sounds similar to what I experienced. I would definitely give your doctor a call and tell him/her what your experiencing. Steroid medication can be rough.

It's almost like I'm unintentionally holding my breath. Then I realize I'm doing it and catch my breath.

I served in the military for 6 years competing in marathons and triathlons. I got out in '09 on a medical retirement. It was around this time that I started to develop symptoms of dysautonomia. I was diagnosed with asthma and nocturnal hypoxia (I used oxygen at night for several years). Sometimes, I get shortness of breath and extremely bad chest pain. It's almost like somebody kicked me in the chest. I complained to my doctor that sometimes I'll just stop breathing without realizing I've done so. When I catch myself, I'll take a deep breath and begin a regular breathing pattern again. Does this sound familiar to anyone?

I too have both urinary and fecal incontinence. I have very poor control of either. I use pads (briefs/diapers) to manage my condition. The urinary issues generally are easier to handle over a public bowel event. That can be extremely embarrassing. To manage odor, there are herbals you can take that could make living with such a condition much less traumatic. One product is called "nullo", or cholorophyllin copper. The other is called "devrom", or bismuth subgallate. These organic compounds neutralize fecal odor. They are generally pretty popular in communities centered around incontinence. They are relatively inexpensive. I get mine from my local VA pharmacy. You could also ask your gastroenterologist about them. These are also used in ostomy communities as well. Just a thought.