GApotsie

So, I have an appointment at Mayo in Jax, FL to see Dr. Flipse. Has anyone seen him? The scheduler said that he works with Dr. Kusumoto and both treat various autonomic issues. I haven't read much about him online.

All 3 of my doctors stress "high salt" diet and lots of fluids with Florinef. I've never been told how much I should be consuming daily. How much do you intake?

This is such a tricky area. As a nurse, I am very skeptical about taking anything Class C with pregnancy; then again, I know syncope while pregnant is not good either. I would ask the doctors for specific rationales for the "yes" and the "no." They normally look at risks vs. benefits. I am 30 and newly diagnosed. The first thing my EP discussed was pregnancy, as we do not have children yet and were hoping to start trying soon. He basically said no Class C drugs. He didn't mention the rationale behind Midodrine, as I am not on it now. He discussed Florinef and Norpace CR in detail with me since I am taking it. He said it is ideal to get the symptoms (syncope particularly) under control and then go drug-free for the first and second trimesters. This is certainly individualized based on the patient. Press both doctors for their rationales. I think doctors are sometimes hesitant to give specific answers because they do not want to be responsible for the outcomes. When I got copies of my medical records, the one physician had made a HUGE note about my medications being discussed and the risks associated with pregnancy. He wrote MORE than he said to cover his buttocks I am sure.

I am going to print this so I can review it better - my eyes don't focus on the screen in the afternoons for some reason. I am health info fanatic (I used to eat, sleep, live nursing), but I have not examined any of this in relation to POTS...seems like an interesting read and some areas worth exploring. Thanks for posting,

I am new to all of this, but I am trying to apply some of my cardiac nursing knowledge into my understanding. My EP told me to increase my salt intake to help regulate my BP. I may be completely wrong in regards to POTS, but this is the way I understand sodium regulation. In the body, "where sodium goes, water follows". If you consume more salt, you increase your serum sodium (salt level in the blood); therefore, you increase the amount of water your body is holding onto in the vascular spaces (vessels). This adversely increases your blood pressure by the concept of "more volume, more pressure." Florinef helps your body hold onto more sodium/water at the kidney level (reuptake) before excretion. The simple way my EP descibed it is, the Florinef makes a last ditch effort to grab onto any sodium that your kidneys are naturally trying to excrete. My serum sodium level is normal, but the concept is to get it elevated to help increase the BP. The tricky part is, my BP is normal, but then just bottoms out.

I am new to this, but I am willing to go anywhere and do whatever to find results. I am interested to hear about your visit. I am willing to travel wherever...my husband is like, "Let's go..."

For the past few months, I have felt so isolated and alone with this battle. My husband sees the agony and really understands this is bigger than the average diagnosis. While I have some great friends, family, and church members, they do not have any idea how complicated my health issues are. They constantly ask, "Are you over that stuff yet?" I know they mean well, but I don't exactly have a stomach bug or the flu. In the past week, I have been blessed to find a few groups of wonderful people that GET IT! I am so thankful! I have always been the "life of the party" so to speak, and to be down and low without anyone who understands, can really way heavy on a person. While I am still struggling, I feel like there is HOPE! Thank you friends!!

Your insurance company may be able to gather an estimated cost for services. Before I went to Emory, my insurance company sent me an email regarding specific services they thought I would receive and Emory's associated costs. It was an estimate, of sorts; the insurance claims Emory has filed that I have reviewed online are very close to this estimate. I have State Health Employee Benefits in Georgia, so I do not know if all insurance companies do this or not. I am able to lookup a good bit of information on their website, and then if I can't find what I am looking for, I can click a Service Estimator button and submit the information. I typically get a response within 48-72 hours.

I am going to check into Mayo after my next Emory appt. I am actually closer to JAX than ATL. THanks for the info - you know, that is the Dr. my cardiologist actually mentioned at Mayo; he must be known for his work!!

Anyone been to Mayo in Florida? My cardiologist suggested we start at Emory, and if we don't get results, perhaps Mayo. I am so discouraged at this point. I am trying to educate myself so I know what to ask and what to look for in a physician. I don't know if the EP (DeLurgio) at Emory really "treats" or just diagnoses. He seemed to be knowledgeable, but then again, I was comparing him to the doctors around my hometown in south GA. Both my neurologist and cardiologist said from the beginning that they believed it was an autonomic dysfunction, but they do not have experience with treating them. It was a relief that they seem to have been on the right track, but I don't know if Emory is going to be a dead end at this point. At my next appt in March, I am going to have specific questions ready, and I am going to ask for referrals elsewhere if they don't think they can treat me. I am just frustrated! I want my life back.

Are any of you being treated by a specialist in Georgia? I live in Georgia and have been seen by the Director of Electrophysiology at Emory, but I am curious about other doctors who specialize in Autonomic Dysfunctions.

My nursing specialty is cardiac, so the usage of the NTG SL was a little confusing to me as well. My system does not handle artificial epi that well, and since Isuprel has similiar properties, this may be the reason he elected not to use it. I am not sure if the NTG skewed the results or not. I had tachycardia before passing out (HR increased from 75 to 147), and NTG is often associated with bradycardia. I just felt so weird during the test (total brain fog) that I really could not even voice how I was feeling before they gave me the NTG or before passing out. The nurse told me that the EP was talking to me, she observed my HR spike, and I literally closed my eyes (passed out). I am just so tired of passing out daily. In the last 3 months, I have passed out all but 2 days. I had to quit my job as an ICU RN. I am so frustrated because I like to FIX things, and I can't fix this... I am so looking forward to a medication combination that will work for me. I am going to talk to my EP about the TTT and NGT usage when I go back in 3 weeks. I want more clarification about my diagnosis and what I am dealing with.

I do not have tremors, thankfully. My memory is terrible these days. I have always been a perfectionist in regards to grammar and speech. Now, my husband just laughs when I say something like, "the food room" instead of "kitchen." I make sticky notes as reminders, but forget to look at them too!! LOL

I had an EEG, and the results were pretty normal. I did get extremely lightheaded during one portion - they made me blow breaths to spin a pinwheel while they recorded the brain activity. Everything came back normal, but that blowing wore me out. The flashing lights also gave me a huge migraine afterward.

I was told by the EP at this facility that they use Nitrogylcerin sublingual at 8 minutes on the tilt table to increase venous dilation and pooling. He explained the Nitro is basically used to speed up the test. He said it helps them see how your body reacts without having to be strapped down for 20+ minutes. I was already feeling weird before the Nitro. I really do not think the Nitro caused my BP to drop because my mouth was very dry and the Nitro tab had not even melted yet. Half of the SL tab was still under my tongue when I came to after they put me flat and bolused 750 cc of Normal Saline IV. Before the Nitro, I was already foggyheaded - for some reason, I became so focused on the clock on the wall (to the point that I was thinking I should take it home with me); I guess my brain was already being deprived O2 at this point. Thus far, I am not seeing any results from the meds. I go back to Emory next month. He said it's basically trial-and-error with the meds, and we will work until we get the right combo. I am fortunate to know my cardiologist pretty well from working at the hospital he practices in - I worked with his patients primarily. He was fast at diagnosing the problem and getting me to an EP. The first EP didn't offer much direction, so he quickly scheduled me with Emory. My cardiologist is thinking I should apply for disability at this point, but I do not know if our condition meets the defined criteria.

I am a newbie to this site, and have found so much helpful information. Two weeks ago, I met with the Director of Electrophysiology at Emory to discuss my medical issues. He confirmed I do have an autonomic dysfunction based on my symptoms and previous tests, and then ordered a tilt table test. I have a copy of my report and would like to share it and get some input from you guys: Baseline HR 75, Baseline BP 122/67 HR at termination 147, BP at termination 78/41 At 8 minutes, they gave me 0.4 mg Nitro SL, and at 9 minutes (before the Nitro even melted under my tongue), I fainted while the physician was talking to me about his wife (she also has POTS). The actual results on the test state, "The patient was syncopal with sinus tachycardia and hypotension, consistent with neurogenic syncope with a primary vasodepressor response." At this point, I know I have an autonomic problem, but I am not sure if it is NMH or POTS. He did not really specify. Your thoughts?!? My symptoms include: syncope daily; fatigue from doing nothing; get lightheaded if I stand longer than 5-6 minutes; extreme weakness after shower, toileting; throbbing head (feels like nerve jumping)/migraines; can’t sleep – feel restless or like something is wrong; foggy headed; tingling/numbness; sometimes I feel disassociated from the environment. I am wearing a heart monitor just so I can learn what my heart is doing - sitting HR is 70, standing for 3 minutes is 120, walking around for 6 minutes is 160-170. I am a Registered Nurse, but this is all completely new for me. I spent 5 years battling major stomach issues and anemia (doctor thought this was the reason for occasional fainting). I had a Nissen Fundoplication and gallbladder removal two years ago. My syncope became more frequent after the surgeries. Perhaps my stomach issues were just a symptom of AD the whole time.... I am already on Florinef 0.2 mg AM and 0.1 mg PM, and they added Norpace CR 100 mg twice a day. Thus far, I have passed out every day for 85 days except for 2 days. I had to quit my job Thanksgiving weekend because I am so weak and foggy headed. Plus, it would not be good for me to pass out on a patient while performing my nursing duties. I am stuck at home all day and unable to drive. I have always been active and hyper, now I feel like a prisoner to my health.