Interpreting Ttt Results

[GApotsie]

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.

[sue1234]

Welcome, and I can empathize! I don't drive and am stuck at home most days, also. My HR goes up about 30-40 points and it just makes me feel awful.

So, have the meds helped at all since you started them?

Can I be nosy and ask what your stomach issues were?

[mwise]

I can empathize with you because I am a Registered Nurse also and know how it feels not to be able to work and over whelmed with feeling so sick. I am on short term disability because like you, I was symptomatic basically bed bound with extreme weakness, fatigue, unable to eat, feeling bloated/pain when eating, had a 30lb weight loss in 10 months, etc...The results of my TTT showd severe cardiovagal and cardiovascular adrenergic dysfunction and a QSART findings consistent with sympathetic sudomotor abnormality giving me a diagnosis of Autonomic Neuropathy (Orthostatic Hypotension Dysautonomia) in Dec. 2010. I follow with Neuorlogists at the Cleveland Clinic in Ohio.

I was initially on Florinef .1mg qd, but had such bad side effects, that it was stopped and now I am on Mestinon 60mg 3xday (helped with stomach motility too) and Midodrine 5mg 3xday. The Mestinon and Midodrine has got me back on my feet to going from being basically chair, couch & bed bound to walking around the house which includes going up & down stairs 2 miles a day (Pedometer).

I sometimes use a Rollator Walker (has a seat on it) when walking when I feel a litte tired. I am now able to drive a car again and may be returning to work soon.

It just may take some time for you like it did for me to get me where I am now. I would continue to follow up closely with your doctors about a specific diagnosis, medication changes, diet, activity and testing. Ask lots of questions. The Internet is a great resource. With the help of the forum, I am hopeful you will get your quality of life back like I am doing each day.

BTW-I think they should do a study of how many of us have had our Gallbladder's out and have Dysautonomia. I had mine out in 2005 and never was healthy after that.

[akavella]

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.

i am curious...did they give you the nitro when your bp was 120's and then later you fainted? hypotension is a frequent side effect of nitro and if your bp was normal or on the low side it may have caused it to drop more, then caused the syncaple episode. there is no doubt that you have POTS in my mind but i would question NMH due to the fact that nitro was given. what was the reasoning? were you having chest pain?

[sue1234]

I had my gallbladder out also. I would like go ask--when you all had yours removed, did you get the "bile" diarrhea? I did, and i know I chronically lost fluid through that every morning. I don't really get it anymore, but now I have POTS and the lovely constipation.

[GApotsie]

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.

[corina]

just to add, i haven't had my gallbladder out (yet ) but found out that general aneasthesia during surgery hits me hard. i can tolerate epidurals very well, it's the ga that makes my dysautonomia much worse.

hope you'll find the right for you (combo of) meds soon gapotsie and that you will be able to keep your job!

take care,

corina

[cmruls]

I don't understand the giving of NTG at 8 minutes to speed up the test. He saves 12 minutes? That is soo artificial to give ntg. I would think that a non-pots given ntg sl would drop their pressure and pass out. Ntg does not create a natural physiologic state. Your symptoms and history all sound dysautonomic. I don't know, ntg doesn't make sense to me.

[akavella]

I don't understand the giving of NTG at 8 minutes to speed up the test. He saves 12 minutes? That is soo artificial to give ntg. I would think that a non-pots given ntg sl would drop their pressure and pass out. Ntg does not create a natural physiologic state. Your symptoms and history all sound dysautonomic. I don't know, ntg doesn't make sense to me.

i agree, most use isuprel not nirto, and i feel if you were already passing out nitro was not a good choice. isuprel speeds up the heart rate and does not slow it down or cause hypotension. maybe you should ask to have repeated without nitro if your diagnosis is still in question. you may not need medications if you have had multiple syncopal episodes. i also think your sx sound like a form of dysautonomia.

[GApotsie]

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.

[Brye]

Sorry you're having so much trouble. I was an ER nurse prior to being diagnosed with POTS after having my 4th child 3 years ago. I haven't been able to work since. I had HR increases from 30's-40's up to the 160's when I stood up. It was a terrible feeling just to stand and I'm a fainter as well. My atenolol seems to be my best drug. My last TTT was actually normal. If I even miss one dose of my atenolol I can feel the tachycardia start to kick in. I still faint occasionally but not nearly as much as I used to. I can exercise on a recumbant bike and have gotten a lot stronger.

It's hard to find the right drug combo and I hate adjusting them. I would love to go back to work but it's not looking good in the near future anyway. I get horrible hand tremors if I get at all stressed or hurry to get something done. I also have some bad memory problems. Plus there's always that risk of fainting. I did apply for disability and was approved in record time. The doctor made the risk of syncope very clear on my application. When I tried to return to work the hospital wouldn't take a work note indicating a chance of syncope and the doctor wouldn't leave that out. I didn't really have a choice. Hope they find the right treatment for you. I understand your frustration!!

Brye

[Noreen]

BTW-I think they should do a study of how many of us have had our Gallbladder's out and have Dysautonomia. I had mine out in 2005 and never was healthy after that.

I agree with you about the gallbladder. I had mine out 7 months prior to coming down with fibro in 1990. The diagnostic list just grew from that point on.