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Dysautonomia or SVT
I was diagnosed with "late" POTS last fall at Cleveland Cinic after I failed the TTT. I have been struggling with the diagnosis because most of my "events" with tachycardia do not relate to a posture change, as I pointed out at CC. Most are when I have been in the same position for a while (lying down for 1/2 hour, sitting for an hour WITH compression hose on, driving in car etc..)
I went fom Aug-April with NO symptoms of POTS, Tachycardia or anything unusual. I attributed that to increase in fluids, salt, potassium and wearing compression stockings. Since April, however, I have had 4 events, including tachycardia while sitting in meetings and had to go by squad to ED two times, and an event when I was driving on the freeway that nearly caused an accident. I saw my CC cardiologist (dysautonomia specialist) and he said he suspects an arrythmia now, and thinks 8 months symptom-free is not consistent with POTS. I saw a second cardiologist at another hospital this week as a second opinion, and he questions the POTS diagnosis altogether, and agrees it may be an arrhythmia. I am on Cardionet heart monitor and had an event yesterday that was captured on the monitor, thankfully, but I don't have the doctor's opinion on it yet, plus I have 3 more weeks on the monitor, also. My tachycardia events come on quickly, I get lightheaded and sometimes near-faint or faint more rarely. At the ED yesterday, they determined I was well hydrated, blood work normal (including potassium and sodium), had been wearing the compression hose. Does any of this sound familiar to anyone? Does this sound like dysautonomia or SVT? And what is the controversy about having ablation if you do have POTS? If I have POTS/Dysautonomia AND SVT, is ablation still contraindicated? I am confused. Also, I started yoga today just to help manage my stress level. Has anyone found it to be helpful? My cardiologist said I can't drive, which is hard to manage with 2 little kids and a job 45 minutes away by freeway only....I feel like my whole life is up in the air with all of this. Thanks for any advise, feedback words of encouragement!
I went fom Aug-April with NO symptoms of POTS, Tachycardia or anything unusual. I attributed that to increase in fluids, salt, potassium and wearing compression stockings. Since April, however, I have had 4 events, including tachycardia while sitting in meetings and had to go by squad to ED two times, and an event when I was driving on the freeway that nearly caused an accident. I saw my CC cardiologist (dysautonomia specialist) and he said he suspects an arrythmia now, and thinks 8 months symptom-free is not consistent with POTS. I saw a second cardiologist at another hospital this week as a second opinion, and he questions the POTS diagnosis altogether, and agrees it may be an arrhythmia. I am on Cardionet heart monitor and had an event yesterday that was captured on the monitor, thankfully, but I don't have the doctor's opinion on it yet, plus I have 3 more weeks on the monitor, also. My tachycardia events come on quickly, I get lightheaded and sometimes near-faint or faint more rarely. At the ED yesterday, they determined I was well hydrated, blood work normal (including potassium and sodium), had been wearing the compression hose. Does any of this sound familiar to anyone? Does this sound like dysautonomia or SVT? And what is the controversy about having ablation if you do have POTS? If I have POTS/Dysautonomia AND SVT, is ablation still contraindicated? I am confused. Also, I started yoga today just to help manage my stress level. Has anyone found it to be helpful? My cardiologist said I can't drive, which is hard to manage with 2 little kids and a job 45 minutes away by freeway only....I feel like my whole life is up in the air with all of this. Thanks for any advise, feedback words of encouragement!
I don't have experience with biofeedback for tachycardia, but deep breathing may help to slow your heart rate down for when you have it AT REST (not standing).
I don't have dysautonomia cause me to forget to breathe personally. However, since you got a premonition prior to your heart racing, I am wondering if you might be having a dip in estrogen that brings on your tachycardia (do you feel hot at the same time your tachy comes on)?
I don't know what degree your stockings are compressing, but I guess if you are still having the tachy come on with standing, they likely are not doing all the job to keep your adrenaline and noradrenaline from releasing to speed your heart to prevent you from passing out.
I was put on a beta blocker before, the theory the doctor told me being that it should make the heart beat more effectively and thus actually raise my blood pressure. I determined they did not do me any significant good, and at times, those tended to make me feel worse. I had a cardiologist here recommend I not take any blood pressure medicine because he felt it would all make me feel worse.
I have played a guinea pig before with medications and don't think fears are unfounded when trying out medications, particularly when you see so many lawsuit ads on tv over them and with all their potential side effects and withdrawal side effects. You have to weigh the risks versus if you are likely to be benefited and if the benefit for you outweighs the risk.
I think with all the epinephrine that flows in the body of a person with POTS, feeling at least wired is not to be unexpected.
Learning to live with the dysautonomia can help a person relax more often about it. Knowing how to get up from bed different than you used to, having a nice shower chair, not reaching up above your head too much, being careful not to do much after high sugar intake, expecting the occasional chest pains, moving slower at times, things like that.
Let me know if the doctor is willing to check your iron? If it is low, you may find iron along with ester-C vitamin supplementation would correct the deficiency and help you to have some improvement in your symptoms.
I don't have dysautonomia cause me to forget to breathe personally. However, since you got a premonition prior to your heart racing, I am wondering if you might be having a dip in estrogen that brings on your tachycardia (do you feel hot at the same time your tachy comes on)?
I don't know what degree your stockings are compressing, but I guess if you are still having the tachy come on with standing, they likely are not doing all the job to keep your adrenaline and noradrenaline from releasing to speed your heart to prevent you from passing out.
I was put on a beta blocker before, the theory the doctor told me being that it should make the heart beat more effectively and thus actually raise my blood pressure. I determined they did not do me any significant good, and at times, those tended to make me feel worse. I had a cardiologist here recommend I not take any blood pressure medicine because he felt it would all make me feel worse.
I have played a guinea pig before with medications and don't think fears are unfounded when trying out medications, particularly when you see so many lawsuit ads on tv over them and with all their potential side effects and withdrawal side effects. You have to weigh the risks versus if you are likely to be benefited and if the benefit for you outweighs the risk.
I think with all the epinephrine that flows in the body of a person with POTS, feeling at least wired is not to be unexpected.
Learning to live with the dysautonomia can help a person relax more often about it. Knowing how to get up from bed different than you used to, having a nice shower chair, not reaching up above your head too much, being careful not to do much after high sugar intake, expecting the occasional chest pains, moving slower at times, things like that.
Let me know if the doctor is willing to check your iron? If it is low, you may find iron along with ester-C vitamin supplementation would correct the deficiency and help you to have some improvement in your symptoms.
Thanks for the feedback! My main symptoms are tachycardia, presyncope and rarely syncope. All blood work and 24 hour urine are completely normal. I saw my dysautonomia doctor yesterday and he said my event last FRiday was "just sinus tach". In fact, he said I hit the record button before my heart even started racing. I hit record because I had that sensation that it was coming...almost like prodromal symptoms. The nurse yesterday said that made sense to her, as it starts in your head...your brain knows it needs oxygen so it starts the heart racing, but frankly, the doctor acted like I was having a self fulfilling prophecy kind of tachycardia. Like I made it happen. I do feel extremely anxious and stressed since this all started up again last month, but I cannot attribute stress to the events 4 weeks ago at all. Truly out of the blue. Has anyone had experience with biofeedback for tachycardia? Is the autonomic dysfunction causing me to forget to breathe on occasion, thus causing my brain to signal for additional oxygen? Or, is it the significant venous pooling I have in my lower legs, even though I am wearing compression hose when this happens? I am still confused and unfortunately my doctor is a very poor communicator and lacks compassion (where I am concerned at least,) so appt.'s with him do nothing to assuage my fears or educate me. Anyway, he talked to me about a beta blocker (Topronol?not sure) and I expressed revervations mainly because I have not seen too many stories on the internet where beta blocekrs really helped dysautonomia patients. Also, it is temporary to be on the beta blocker, so what happens in a few months when they try to get me off? Is it like retraining my heart? I asked about SSRIs since I also have a strong anxiety component, but he got kind of snarky about it, saying my primary care physician would need to prescribe that, but he did say Cymbalta and Pristiq have been good with Dysautonomia. But then I worry about coming off of one of those, as I keep reading that it is really nasty to get off. I am sure I am being silly about meds, but they scare me. I still have that belief that I can cure tghis with lifestyle measures, but that isn't working now so I gusess I have to let that go.I am going to take short term disability from work and just focus on geting better. Thanks to anyone who has the patience to go through this and answer my questions. I should ahve numbered them :) Also, I will ask my primary doc. about iron. It is normal in my CBC, but I think my primary doc. would do the more specific testing for it. That's a good idea, so thanks!
A person can sometimes have remission with POTS and I wonder if your POTS is being well-controlled with the measures you have taken?
Another form of dysautonomia can be IST- short for inappropriate sinus tachycardia. That can happen while at rest as opposed to POTS which happens from standing, etc..
Did your cardiologist while you were in the office or did the ambulance squad or an ER capture an SVT episode?
Supraventricular tachycardia (SVT) is triggered when the electrical activity goes haywire in your heart- different from plain sinus tachycardia. Ablation is something they sometimes consider with SVT when lifestyle changes and/or medication don't get it under control, but it is something you do not want to do if you truly do have POTS, because it is possible you could wind up pacemaker dependent. So, it is important to make sure you don't have POTS.
Did the doctor tell you SVT is the type of tachycardia you are now experiencing or only tell you they suspect some kind of arrhythmia and are now testing you to determine what kind you might have? Have they considered it to dangerous to stop all treatment under their supervision for POTS and conduct another tilt table test to see if you would still fall under that diagnosis? I was diagnosed with both IST (first) and POTS (second via tilt table).
I also believe iron deficiency anemia can aggravate tachycardia- has the doctor checked your iron, your ferritin, your iron saturation & your TIBC (total iron binding capacity)? Once, even while my CBC was normal, I felt like the tachy was worse when my iron was low. If you haven't been tested lately, please ask for complete iron testing.
Additionally, it is very important that you be getting your potassium levels monitored while taking it- have they been doing this? And have they checked your thyroid hormone levels lately to be make sure you are not experiencing hyperthyroidism which can lead to rapid pulse (if they think it's a possibility with a thorough knowledge of all your symptoms)?
I don't believe in yoga myself, as it's roots are in Hinduism, so I haven't tried it. I don't know if others on this forum with dysautonomia have tried it or not.
It must be tough while you are struggling to find answers for these disconcerting symptoms and the limitation on travel. I hope you are able to get disability?
Another form of dysautonomia can be IST- short for inappropriate sinus tachycardia. That can happen while at rest as opposed to POTS which happens from standing, etc..
Did your cardiologist while you were in the office or did the ambulance squad or an ER capture an SVT episode?
Supraventricular tachycardia (SVT) is triggered when the electrical activity goes haywire in your heart- different from plain sinus tachycardia. Ablation is something they sometimes consider with SVT when lifestyle changes and/or medication don't get it under control, but it is something you do not want to do if you truly do have POTS, because it is possible you could wind up pacemaker dependent. So, it is important to make sure you don't have POTS.
Did the doctor tell you SVT is the type of tachycardia you are now experiencing or only tell you they suspect some kind of arrhythmia and are now testing you to determine what kind you might have? Have they considered it to dangerous to stop all treatment under their supervision for POTS and conduct another tilt table test to see if you would still fall under that diagnosis? I was diagnosed with both IST (first) and POTS (second via tilt table).
I also believe iron deficiency anemia can aggravate tachycardia- has the doctor checked your iron, your ferritin, your iron saturation & your TIBC (total iron binding capacity)? Once, even while my CBC was normal, I felt like the tachy was worse when my iron was low. If you haven't been tested lately, please ask for complete iron testing.
Additionally, it is very important that you be getting your potassium levels monitored while taking it- have they been doing this? And have they checked your thyroid hormone levels lately to be make sure you are not experiencing hyperthyroidism which can lead to rapid pulse (if they think it's a possibility with a thorough knowledge of all your symptoms)?
I don't believe in yoga myself, as it's roots are in Hinduism, so I haven't tried it. I don't know if others on this forum with dysautonomia have tried it or not.
It must be tough while you are struggling to find answers for these disconcerting symptoms and the limitation on travel. I hope you are able to get disability?
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