Aa
Newly diagnosed
Hello, I am hoping I can find others going through what I have been going through. 3 weeks ago I had a pre-syncopal episode and since then my life has changed. I went to the Drs and found out my HR was only between 42-48, whereas my baseline prior to this was in the 60's. I am very healthy, a lacto-ovo-vegetarian, exercise 4x week, no smoking, very rarely drink socially and no drugs. Since this episode, I have been hospitalizd twice, the most recent being last week for a prolonged syncopal episode where I was unresponsive. I have been constantly lightheaded, worse with changing positions or for standing/walking for greater than 15 minutes. I had a positive tilt table test ( HR went to 30 and BP to 70/50), have been on an event heart monitor for 1.5 weeks. I have sinus bradycardia, hypotension, and syncope. The Drs are hesitantly calling this dysautonomia but it sounds they arent totally sure. I had a brain MRI yesterday, am seeing a neurologist in 1 month and have a cardiology appt tomorrow. I am currently on midodrine 10mg TID and Florinef 0.1 mg once a day. The mornings are my absolute worst-I do not feel well until 2 doses of midodrine and am very frustrated. I want my life back...I have read many of the discussions and see some of you understand that TID dosing of midodrine isnt enough-you know when this med wears off!! I also got a weird tingling scalp sensation and keep breaking out into goosebumps even when Im not cold but these side effects have disappeared. Ive been on midodrine for 2 weeks but just started florinef 1 week ago-I have to say I can see an improvement as long as Im sitting, but still get very lighteaded and pre-syncopal with walking around for > 15 minutes. Does anyone have any suggestions or thought?
How did your cardiologist visit go? Did you get any heart related tests aside from the tilt table test? If so, any results? Did the cardiologist suggest a pacemaker would be beneficial to increase your heart rate?
For those of us with the opposite problem- fast heart rate, they tell us to avoid caffeine. I wonder if the cardiologist suggested drinking beverages with caffeine and eating chocolate? A cardiologist I saw in the past suggested eat pizza, something he said (along the lines of) normally a cardiologist would never want to say.
For those of us with the opposite problem- fast heart rate, they tell us to avoid caffeine. I wonder if the cardiologist suggested drinking beverages with caffeine and eating chocolate? A cardiologist I saw in the past suggested eat pizza, something he said (along the lines of) normally a cardiologist would never want to say.
Hi there,
I am recently diagnosed with PAF. I understand the frustration in trying to get a dx. My experience was that after a positive tilt table test I was sent for an echo-cardiogram and an MRI. I think this is pretty standard. The neurology visit was where a dx was officially made. That may happen for you too. Your regular doctors may not be familiar with autonomic dysfunction or it's tx.
There is no autonomic function test center near me as I am on the west coast. Therefore I have only had standard blood tests and kidney function tests that can be done in regular labs. Some people go to Mayo, Vanderbuilt, or the Cleveland Clinic for further evaluation. The NIH has ongoing studies as well for which you may qualify to participate.
There is a lot to learn here on line here from others who have been living with autonomic dysfunction for some time. They seem very willing to share information and are quite knowledgeable. There are a lot of journal articles out there as well. I know it can feel really overwhelming to be dealing with symptoms which change and trying to sort out information. MedHelp has many forums on health subjects such as sleep problems and autoimmune dxs. that it is really a great tool.
Hang in there and remember that while we are all effected in unique ways by this we also are like a big family that can give encouragement and information to each other.
Be sure and let us know how things are going as you find out more.
I am glad you are posting on this site! Marie
I am recently diagnosed with PAF. I understand the frustration in trying to get a dx. My experience was that after a positive tilt table test I was sent for an echo-cardiogram and an MRI. I think this is pretty standard. The neurology visit was where a dx was officially made. That may happen for you too. Your regular doctors may not be familiar with autonomic dysfunction or it's tx.
There is no autonomic function test center near me as I am on the west coast. Therefore I have only had standard blood tests and kidney function tests that can be done in regular labs. Some people go to Mayo, Vanderbuilt, or the Cleveland Clinic for further evaluation. The NIH has ongoing studies as well for which you may qualify to participate.
There is a lot to learn here on line here from others who have been living with autonomic dysfunction for some time. They seem very willing to share information and are quite knowledgeable. There are a lot of journal articles out there as well. I know it can feel really overwhelming to be dealing with symptoms which change and trying to sort out information. MedHelp has many forums on health subjects such as sleep problems and autoimmune dxs. that it is really a great tool.
Hang in there and remember that while we are all effected in unique ways by this we also are like a big family that can give encouragement and information to each other.
Be sure and let us know how things are going as you find out more.
I am glad you are posting on this site! Marie
Unfortunately, you'll probably have to try other meds (like adding the florinef) and differing doses of other meds (you may do better on a higher dose of florinef if that dose doesn't work, for example) before round-the-clock dosing of Midodrine would likely be considered. Additionally, you'd probably be put through more tests (to ensure that supine hypertension wouldn't be an issue and that the nature of your specific dysautonomia warrants the round-the-clock dosing as opposed to some other intervention). Also, some doctors are outright against the idea no matter what. I hope that doesn't sound discouraging, I just wanted to give you an idea of the steps involved in getting to that point, since you mentioned that possibility. It does work for some people, but it really depends on a number of factors and because of the contraindications if it's NOT right for a given patient, it's generally "down the pipeline" a bit.
The tingling sensations and goosebumps are normal side effects from midodrine, but usually disappear after people take it for a while as seems to be happening with you. So hopefully you won't have those anymore now that your body is adjusting to the medicine. As for the florinef, have your docs talked to you about a fluid- and salt-loading diet to go with it? Florinef works by helping your body retain salt and fluids, but you can't retain what you aren't taking in, and it is generally prescribed along with a fluid- and salt-loading diet. If you haven't been given specific recommendations on how much to take in on a daily basis, that's something you should ask about; common values are around 4 L of fluids (water/decaf tea or coffee/electrolyte beverages/electrolyte popsicles/crystal light/etc.) and 5000 mg or more (varies, so talk to your doctor) of sodium per day.
It's hot in PA this time of year (hello neighbor! I'm in OH!); have your doctors talked to you about the effects of heat intolerance? Your symptoms will be much better if you keep your body cool (probably 74 degrees F or cooler). Many patients find that temperatures over 74 and direct sunlight (even through windows for some!) can set off symptom flares in much the same way orthostatic stress (standing up) can. It can also lower the threshold for orthostatic intolerance when you are under heat stress (so you might be able to stand for shorter periods of time before feeling faint, etc.). This is way too much information to cram into one post, but if you want tips on beating heat intolerance, toss up another post asking about it and we'll get you some ideas about that. It might be another way to reduce your symptoms.
Combining lifestyle changes to reduce triggers with medication/treatment to target symptoms will likely provide you with the one-two punch you need to get you the best possible quality of life. It takes a while sometimes to get responses here because everyone here has varying severities of different forms of dysautonomia so some people may be fully functioning most of the time (but struggling to juggle work/family/etc. with a chronic illness), while others have periods of being bedridden and too ill to be on the computer or may be in and out of the hospital on a regular basis. So you may have to be patient with us, but I promise we're a wonderful group of people who are very supportive of each other and collectively have a wealth of information to share.
Welcome, and I look forward to getting to know you!
-heiferly.
The tingling sensations and goosebumps are normal side effects from midodrine, but usually disappear after people take it for a while as seems to be happening with you. So hopefully you won't have those anymore now that your body is adjusting to the medicine. As for the florinef, have your docs talked to you about a fluid- and salt-loading diet to go with it? Florinef works by helping your body retain salt and fluids, but you can't retain what you aren't taking in, and it is generally prescribed along with a fluid- and salt-loading diet. If you haven't been given specific recommendations on how much to take in on a daily basis, that's something you should ask about; common values are around 4 L of fluids (water/decaf tea or coffee/electrolyte beverages/electrolyte popsicles/crystal light/etc.) and 5000 mg or more (varies, so talk to your doctor) of sodium per day.
It's hot in PA this time of year (hello neighbor! I'm in OH!); have your doctors talked to you about the effects of heat intolerance? Your symptoms will be much better if you keep your body cool (probably 74 degrees F or cooler). Many patients find that temperatures over 74 and direct sunlight (even through windows for some!) can set off symptom flares in much the same way orthostatic stress (standing up) can. It can also lower the threshold for orthostatic intolerance when you are under heat stress (so you might be able to stand for shorter periods of time before feeling faint, etc.). This is way too much information to cram into one post, but if you want tips on beating heat intolerance, toss up another post asking about it and we'll get you some ideas about that. It might be another way to reduce your symptoms.
Combining lifestyle changes to reduce triggers with medication/treatment to target symptoms will likely provide you with the one-two punch you need to get you the best possible quality of life. It takes a while sometimes to get responses here because everyone here has varying severities of different forms of dysautonomia so some people may be fully functioning most of the time (but struggling to juggle work/family/etc. with a chronic illness), while others have periods of being bedridden and too ill to be on the computer or may be in and out of the hospital on a regular basis. So you may have to be patient with us, but I promise we're a wonderful group of people who are very supportive of each other and collectively have a wealth of information to share.
Welcome, and I look forward to getting to know you!
-heiferly.
By commenting the post, it goes back to the top so it might get viewed and not lost in all the older posts.
Christy
Christy
Have an Answer?
You are reading content posted in the Autonomic Dysfunction Community
Are there grounds to recommend coffee consumption? Recent studies perk interest.
Salt in food can hurt your heart.
Get answers to your top questions about this common — but scary — symptom
How to know when chest pain may be a sign of something else
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
