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Everything posted by bustersacc11

  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.
  16. I had lawyer from the start. That helped me out a lot. If you are in the US the most any disability lawyer can get if you are awarded disability is $6000. It is not hourly or based on a percentage of your award. Also, get your doctor's on board with what you are doing. You will need their help completely paperwork at some point. Good clinic notes and test records along with documentation showing the consistency of your symptoms is helpful. It is a long process. Fortunately, I was able to get approved in a year. You are trying to approve your inability to perform gainful activity. Definition is on Ssd website. Hope this helps.
  17. My daughter is having a birthday soon. My wife and I decided to invite her class for the first time. Half have not responded and it is past the date that we asked to get back with us. I don't know...maybe it is me but I think it is rude not to reply. The courtesy of simply replying to a simple request so we can make sure the place we are having it, we give them a correct head count, enough food, party favors,etc. I never thought of not responding to a RSVP whether it was to inform them of my regrets or I will be attending. What really burns me is my daughter plays with this one girl everyday and really likes her and tells me everyday that she is coming to her birthday but they have not gotten back with us. The girl is cute and nice. Too bad her parents don't have some of their daughter's attributes. Let me explain from my experience these parents for you. She is a stay at home mom (husband is self employed). Young couple with a lot of assets. Estate home, nice cars, clothes,etc.. So clear to me that what they have was given to them not earned. However, she thinks she is one of the pillars of our school community. The husband never says hello to anyone and appears arrogant. The school is mostly made up of lower to middle income families, with a few well off families (by the way stick together). I don't understand why they don't go somewhere else of more prestige. Anyway, when my daughter started to play with her I got concerned because I could see that these parents really think they are the cats meow. I could sense that my daughter and my wife and I are not good enough for them. Reinforced when my wife took our daughter to her party. She was not good host, rude to my wife, never said thank you for the gift or coming. I think you get with what we are dealing with. Trust me, these parents are not letting me down by not coming but a little girl that doesn't understand why she is not coming. That breaks my heart and makes me angry. I have always smiled and said hello but I don't know if I can hide my true feelings anymore despite having possibly another 8 years with this family. Another family, I just spoke to a dad from her class and he was saying about how they got the invite. I remember saying just let us know what you decide. Day before that we ran into his wife at the store and she never said anything. Really people. I know we all have the same horrible constraints on our time but some people really come of like the world revolves around them. I could go on-on with my isolated occurrences with these people. My daughter is just so excited about having a party and I just want it to be everything that she imagines it is going to be. In conclusion, Any parents out there relate to my RSVP situation or advice on how to keep a smile on my face when I have to see these non-RSVPers?
  18. Arizona Girl, Yes, I have read many of Dr. Grubb’s articles. He seems to have the reputation of being one of the elite in this sub-specialty. In addition, he is a world-renowned electrophysiologist. I learned that he likes using Biotronik pacer for people with severe NCS since one of the bells and whistles is it monitors BP. He has articles where he has implanted this device for people with severe NCS have shown to have no syncope episodes post-implant. Great stuff. I asked the Vandy docs this year about switching to Clonidine and they told me that since Methyldopa and clonidine are in the same class of drugs and both have similar effects of reducing sympathetic tone and would have similar side effects they prefered that I stay on Methyldopa. Vandys experience is they have found methyldopa to provide more steady effects. Clonidine option was not recommended. I feel like the minority taking this drug. I have not come across too many people that were prescribed Methyldopa. Overall, it seems a lot of people with a hyper component are prescribed Clonidine first. Curious. Do you feel getting the autoimmune issues under control and feeling your autonomic symptoms are improving that it could appear your experiencing less side effects with Labetalol than Clonidine or not? Your experience with Labetalol is nice to hear. I am definitely going to mention it. Right now, I am on so much BP medication they are running around (lying and sitting) 100-110/50-60’s. With a <10-13pt drop upon standing (90-100/50-60’s). When I come off BP medication I run 140-160/80-90’s regardless of position and no drop with standing. Sometimes higher with upright posture. Was documented with TTT. Off meds, I hate the terrible forceful contractions. It is so unsettling. The adrenaline surges can happen regardless of position. When those adrenaline flood gates open for whatever reason it is awful. That’s why I like DINET. It is such a great repository for information and place to run things by people that can relate and empathizes. Thanks again for the advice about Tizanidine. I am going back to the Mayo next month for the second time. Pretty soon I am going to have to start weening off all meds. So, before I try Tizanidine or anything new I am waiting to see if they find anything new. My desperate search for symptom relief is all for my wife and children. They are my key-drivers!
  19. Yes, it may support that hypothesis if they are able to get a punch site that captures an abnormal ENFD and/or SGNFD. ENFD is easier quantified than SGNFD. Many variables involved and other things that have not really been sorted out yet to say this is how many sweat glands one person should have.
  20. I am a stay-at-home-dad. Having two very young children I cannot be a wet noodle and dopey. It would not be very safe option. So, I do have some reservations about it being a muscle relaxer and that possibility of making me really sleepy. I am not on tizanidine. I am exploring the idea of trying it as an experiment. If I try Tizanidine it will definitely have to be in tablet form, not capsule, at the lowest dose. I see it has a really short peak and duration time, which can be good and bad depending on your situation. For me, when my dysautonomia (I do not have POTS) came on 5 years ago part of my problem was I developed a very low resting heart rate along with a consistently high BP and terrible adrenaline surges. Subsequently, I had a pacemaker implanted. Unfortunately, while it corrected my slow heart rate it did not provide me symptom relief. For me, medications that can cause bradycardia more often than not effect me. My HR pings at my paced rate and basically causes me a drug induced chronotropic incompetence effect. It is not a good feeling. Exasperates my fatigue and tiredness. Very sluggish. Imagine walking up a steep hill all day when you are actually just moving around your house. That is what chronotropic incompetence can feel like. The BP side of things, I have been trying different meds the past year because I would like some symptom relief with minimal drug side effects. I have been on Methyldopa for 4 years and I feel it has brought side effects that have worsen my dysautonomia even though the adrenaline overload symptoms have decreased. I have weened off methyldopa off and on over the past year to try Toprol, Propranolol, and last month Losartan. All of them controlled my blood pressure, but I still experienced strong hyperadrenergic symptoms, along with side effects from the meds that forced me to abandon these experiments. Vandy has followed me for 5 years, along with opinions on my case from Mayo at Rochester and Cleveland Clinic. At the CC, the radionuclide study done back 2008 did note that I have marked venous pooling. We have not been able to identify a cause and probably never will. I have had sweat tests done in the past and my results are not consistent so I have been tagged possible SFN. Further, I have had two skin biopsy sent off to John Hopkins for analysis. Both times my epidermal nerve fiber density was within normal limits. However, second bx did show a few medium sized swellings (nothing major). Further, sweat gland analysis on one was abnormal but the other came back normal. I was told that even though my nerve fiber density test came back normal that doesn’t mean they are working right. The nerve damage could be higher up and possibly at the dorsal root. Just can’t tell. I will say the sweat gland analysis interpretation result process is far from perfect. Nerve fibers they can count but what is a normal amount of sweat glands someone should have. I have been told just because they are absent on one punch spot doesn’t translate into an autonomic dysfunction process is going on. Overall, the skin biopsy is useful tool to help diagnose the presence and stage the severity of a neuropathy, but it has shown to have some draw-backs in my opinion. 4 years I put my efforts into a cause and have come up blank. Now, I am trying to get some symptom relief with an effective treatment plan since Methyldopa has some side effects that I don’t like and it hasn’t improved my overall well-being. Really at this point, I don’t even know anymore what tests to ask for to look for a disease or to monitor the progression of a disease that we don’t even know I have.
  21. That is what I am afraid of. I am a SAHD and cannot be in a drunk'in stupor, while trying to take care of a my family. I am not using it for spasms; rather, for BP and adrenaline overload. I have a slow HR. Did it slow your HR much? Neg. for pheochromocytoma. These elevations with my cats are captured upon standing. I would of thought that I would have seen better results.
  22. First question. Tizanidine, centrally acting α2 adrenergic agonist, has similar properties to Clonidine and Methyldopa. Has anyone tried this drug to treat his or her hyperadrenergic component? Second question. In spite of taking clonidine, methyldopa, has anyone had their catecholamine’s rechecked while on these drugs and still had high norepinephrine levels? If so, what was the explanation? I recently had my levels rechecked while on Methyldopa and Cozaar and my levels are still high. No explanation other than it wouldn’t change the course of treatment.
  23. Took it back in 2008. For me, it worsened my brain fog. I felt doppy and drugged. Awful experience. Provided no symptom relief. Abandoned after 2 months.
  24. I understand. If you have any specific questions about applying and the process don't hesitate to ask and I will do my best to answer. I share this with you since everyone has varying degrees of POTS. From my experience, even if I had a POTS dx., they were looking more at my symptoms and whether or not I was able to engage in substantial gainful activities because of my physical impairments. Further, it was supported and established by my medical records, tests, dr notes, etc.
  25. I am on disability r/t my dysautonomia. I do not have POTS. Are you just wondering if people get granted disability with dysautonomia or is there something more specific that you are looking for?
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