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bustersacc11

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About bustersacc11

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  • Birthday 08/17/1972

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  1. My HR responds to exercise. I have no problem reaching my target HRs during exercise and my max HR.
  2. I received a pacemaker back in 2009 for sinus bradycardia (not atheletic). Slow rates while awake in 40-50's (during the day). Always maintained solid blood pressures. At the time, we could not determine whether or not or how much of my symptoms were coming from my slow rates or my dysautonomia. I saw some of the elite EP docs at Mayo, Cleveland, etc and it is tough call. If your blood pressure is normal with JUST sinus bradycardia (no other dysrhythmias) they have told me it is unlikely the majority of my symptoms are coming from my slow rates. They would tell me if my rates were in the 30-40s and I was experiencing low BP than we would be having a different conversation. Then, you have to look at your chronotropic response to exercise. If you are stuck at 60 or 70 with exercise or heavy activity that can cause symptoms. Since my pacemaker I have not seen the improvement that I would have liked but in no way has it limited me from doing things that I want to do.
  3. My health issues are with a hyperadenergic dysregulation. While the chances may be small, lets say, I am exposed to really cold temperatures during the winter, or emotional stress or pain, or drinks or medications that mimic adrenaline. Since I have this underlying sensitivity to adrenaline there maybe a possibility with those causes I mentioned above that a cornonary artery(s) could start spasming, which could possible lead me to having a heart attack. When I am under those types of conditions I try to avoid them because I know the cardiac symptoms that come on. The person that I was before could handle those conditions but now I can’t. My other thought on this topic is those out that are not POTS patients; rather, those that tend to lean more on the slow side with their HR. There are patients that suffer from bradycardia and chronotropic imcompetence as a result of autonomic dysfunction. CI is not good and is a predictor of a cardiac event.
  4. My blood pressure dysregulation will also have those swings as you mentioned. For me, it is not so much on the low end with BP but more often I get terrible spikes in my blood pressure. Nevertheless, those swings back and forth just wipe me out. There are options out there to help regulate your blood pressure. You will find everyone is a bit different with what works and what doesn't. Good luck! Hope you get to feeling better soon!
  5. Like Alex, I still use the sportsline watch with chest strap model. I am on my second one. They last a couple of years then the battery goes. There is setting for high and low alarm. Those parameters can be changed from the factory setting. Also, they have a 1-800 for assistance if have problems trying to get it set up. The sportsline model has always correlated perfectly when I take my BP with automated machine. In fact, my last stress test I kept it on. I was on the treadmill all wired up with ECG leads and my watch HR was maybe off by 1-2bpm with the stress test ECG machine. Accuracy is important. There are those times for whatever reason I just cannot get it to give me a reading. For example, I will be sitting in the car and it will shoot up to 210bpm. You can always recheck with putting your index finger over the top and thumb on the bottom of the watch to get a HR. My model is water resistant, not water proof. I try to do water exercises and have to take my watch off. I ruin my watch last time. I would like to know what my HR is doing when exercising in the water but I am not going to pay high dollar for a water proof watch. Overall, the sportsline model works for me.
  6. Your doctor may be right. Further testing may be for your own piece of mine. I totally get it with the cardiac oddities and you want to keep digging to find the answer. I had all the test you mention plus the CT scan. Cardiac MRI is the “Crown Royal” of tests. That is really going to tell you how your heart is functioning and if it is structurally and mechanically fine. You have had ECG, stress ECG, holters to look at the electrical side of things. Stress ECG looks for ischemia, which could indicate decrease blood flow to the heart related to narrowing of the arteries. CT scan with contrast is a nice alternative for people that may have risk factors associated with coronary artery disease. Before someone bites the bullet and goes for a cardiac catherization, a CT scan of the heart is a good alternative to look at your arteries. If you are requesting an angiogram that is an invasive procedure and comes with it’s own risks. I would definitely weigh out the pros and cons.
  7. Not special but a bit out of the ordinary and it appears fortunate to be given an opportunity for follow-up, if needed. I heard the same thing about the Mayo clinic in Rochester. I just came back from the Mayo this month and Dr. Fealey wants to see me back in 8 months to revisit my treatment plan. I live nowhere near Rochester, MN. Vandy offering treatment recommendations and explaining to the patient they need to go back to their own doctor(s) for follow-up. That I can understand. Not saying your wrong or the person who shared their experience that it didn't happen or others out there on DINET. It is just hard for me to wrap my head around that either Dr. Biaggioni, Dr. Raj, or Dr. Robertson wouldn't offer any treatment(s) prescriptions, orders, plan, or recommendations to their patients. I guess being unique has finally paid dividends for me . Thanks for your message and sharing your thoughts on this post.
  8. I have been seen by Dr. Biaggioni over the past 5 years. I have seen him multiple times. Have needed to correspond with him via e-mail regarding my condition and tweeking my medication. Either himself or one of his staff members get back within a few days (not weeks). Dr. B, Dr. Raj, and Dr. Robertson definitely run one the top research centers for dysautonomia. They have treated me off and on the past 5 years and I am aware of others that continue to seek treatment from Vandy. I don't believe it is an accurate statement that Vandy does not treat dysautonomia patients.
  9. Congrats! I know it is a great feeling when you receive that award notice.
  10. Plasma norepi levels and the presynaptic uptake of norepi were unchanged in some studies for individuals on beta blockers, while other studies have found that long-term ß-blockade is associated with decreased norepi level. Alpha-adrenergic agonist, angiotensin II blockers, beta blockers each in their own way are supposed to theoretically lower norepi. levels. For some, it may effect their results and show a reduction in standing norepi levels, while I have heard of other cases (including myself) who were on meds didn't see a difference in results or actually were a bit higher. The way it was explained to me is your body will keep shooting off norepi to constrict blood vessels and may even produce more norepi to overcome what the additional medications are doing.
  11. Coffee makes me feel lousy. Feel like I am having a heart attack. I truly believe if I was given a Red Bull or shot of expresso it would kill me. Anything that mimics adrenaline opens up the adrenaline flood gates on me and I go into a full blown storm. It is awful. I used to drink 4-6 cups of coffee a day. I loved it. The past 5 1/2 years I can't even tolerate decaf coffee. Simple things we enjoyed.
  12. Here is my two cents regarding this post. One, it goes totally against Mayo’s clinic mission and values as a world renowned health care destination place. It’s primary value states the needs of the patient come first. Like Rachel, I was just there. I saw patients well into their retired years getting autonomic function tests. Specifically, I recall a man clearly in his late 60’s just completely the thermoregulatory sweat test. If this is true it was just implemented over the past few weeks. What would happen if I went there for initial evaluation done by cardiology or some other specialty and they believe it is possibly dysautonomia. They put in a referral but I get told “nope” your 50. This is just baffling to me and makes no sense. From my experience the only way to clear this up is on the same lines as what diabeticgonewild stated. For me, I would specifically bypass neurology and go straight to Patient Affairs and explain to them what I was told, by who, and request clarification along with an explanation if this is true. If this is not true, what do I have to do in order to be seen by one of the autonomic doctors. Make sure whoever gave this false information is corrected.
  13. Recently visited Mayo in Rochester. I saw Dr. Feeley. He was great! He didn't leave no stone unturned. I had a full 5 days of testing. He will make every possible effort to figure out what is wrong and treatment options to help your symptoms. Hope this helps. FYI - Dr. Low is no longer accepting new patients.
  14. If staying in the state is not important, vandy is only 5 hours away. If I am not mistaken, I think cincy to Cleveland is about 3hrs away. You have great choices within a 5-6hr radius.
  15. Attorney fees are set by Social Security, the maximum allowed is $6000. You only pay if you are awarded disability benefits. If you are awarded disability benefits, you pay 25% of the back benefits owed to you or your family; or the maximum amount, $6,000. In simpler terms, you only pay 25% or $6000 whichever is less, if you win your disability claim. Keep in mind that you may have to directly pay your representative for other fees for obtaining medical records, printing, administrative fees, etc. During consultation, check with the disability attorney for a list of fees you may be responsible for out of pocket. If a lawyer tells you he or she gets a percentage of your award different than the guidelines set by the federal government outlined above I don't know if I would use them.
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