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Everything posted by momdi

  1. I don't know about the Florida Mayo, but our experience with Dr. Low at Rochester was virtually NO follow up. The work up and diagosis was great. We already knew that Mike had POTS from a TTT, but Mayo did the sweat test (neg), the norepinephrine test (pos), and total sodium (too low). Knowing those things were invaluable to helping us to better understand POTS. But if you already know that kind of stuff and are looking for treatment recommendations, our experience was that Dr. Low prescribed Inderal 10 mg three times a day. When a local doc wanted to add mestinon, I tried contacting Mayo. Two or three months later I received a one line note from Dr. Low saying that mestinon is often a good idea in POTS. That was it. Reading other posts here on Mayo, it seems that they are inherently weak in follow up, or simply choose not to do it. I think they are mainly an excellent diagnostic place, but that's the extent of it. Good luck!
  2. Could anyone recommend a disability atty in the Phoenix area?
  3. Dr. Goodman at Mayo Scottsdale. Great listener. Very patient. POTS specialist. Trained with Dr. Low at Rochester. Dr. John DeGuzman is a great primary care, but I think not taking new patients right now. He doesn't treat the POTS per se, but he's a terrific doc and seems to understand how POTS might affect everything else. Dr. Marwan Bahu is an electrophysiologist at Biltmore cardiology. Not my favorite personally, but the medication changes he made have proved to be very helpful, so that's saying a lot. I think he's better with the cardio symptoms of POTS than the neuro symptoms - duh! He has some POTS patients.
  4. Seeing Dr. Low at Rochester was very eye opening. Lots of information. Take a friend/relative to help take notes or record the session. Found the smart phone works great for this. Downside is their follow up imo... pretty much nothing, at least with Dr. Low. When you leave, ask what you can do as any further questions come up and see what they say. You can easily get copies of all your tests and doc notes. They can print them out for you at their medical records office as soon as they're in the computer. Stay in one of the connected hotels. Yes, yes, yes. Don't worry about how long you'll be there re the reservation. They're used to that. Totally "Minnesota nice". Everyone in the town is very helpful. Good luck!
  5. Well, with that heart rate, I can see why your doc wants to start you on something. Dr. Low at Mayo prescribed Inderal for Michael at 10 mg, three times a day. He didn't have your problems with low BP though. 60 mg seems high for a POTsie. Can you start with a lower dose? Dianne
  6. Mike's cardiologist switched him from Inderal/propranolol to Toprol XL and didn't do any weaning. Just stopped one and started the other. OTOH, talking with his neurologist (Mayo Scottsdale) the other day, he suggested going back to Inderal. He's been having a lot more hyperadrenergic symptoms lately, and the neurologist says that since the Inderal is non-selective, it has more effects on the brain as a whole. Have you heard back from your doc yet? Dr. Low, at Mayo Rochester, initially put Mike on Inderal, and that seems to be his preferred beta blocker. Or maybe more for hyper adrenergic types?
  7. Michael did much better when the doc switched him from inderal to toprol xl and added clonidine. Even though the toprol is a once daily dose, he splits the dose and takes it twice daily. He did the toprol xl first and got accustomed to that and then worked in the clonidine. The clonidine is what finally improved his sleep patterns, allowing to actually get to sleep at night and be awake during the day. Good luck!
  8. 40 pages! Yikes! Seriously, good luck with that. Agree with Issie... please keep us posted on this. I know you potsies are all so different, but if it's helpful, Michael is hyperadrenergic with high norepi levels lying and standing. He's doing better than ever on Toprol XL and Clonidine. The clonidine has transformed his sleep to a semi normal pattern. And just a couple of hours to wake up instead of half the day. He was on Inderal before, but the toprol xl is just smoother for him. Dianne
  9. Agree with nmorgen. You might need 2 - 3 days on a med before things balance out. OTOH, this can be infuriating. I remember when Michael was having problems with unusual fatigue (even for him) and a very slow pulse (30s, and even in the 20s), he brought a record to the doctor with his pulse and BP readings. The doc said "why are you being so obsessive?" Nice, huh? A friend, who's quite a bit older, brings the same doc detailed readings of her vital signs all the time and he praises her for her thoroughness. This was a young doc and I think he just couldn't relate to someone not too far from his age who was so sick. "Old" people - well, that's ok.
  10. Hi, With a few exceptions, Mayo does not have internists as primary care docs. The primary care are family practice. Our experience with 3 of them have ranged from mediocre to abysmal (don't get me started). When I spoke with a friend who is a nurse and her husband is a Mayo doc, she said that Mayo does not do primary care well. That there has been discussion that they should focus on what they do well - specialty medicine and diagnostics. Two people in my family see Mayo specialists and do not have a PCP there, as does our next door neighbor. So that's not a problem. And anyone can go to Mayo hospital. There is an excellent practice centrally located in the Biltmore area - near 32nd St and Camelback. We see Dr. John DeGuzman there. He is outstanding. A good diagnostician, humble, compassionate, a good listener, smart... and knows about POTS a little, since he's my son's doc. And my son sees Goodman at Mayo. DeGuzman will talk things through with you rather than talk at you. Docs from that practice are frequently featured in the Phoenix magazine's list of best docs. He's also the head of internal medicine at Good Sam, and we've generally had good experiences there. One of the people online here has been going to Dr. Levine who is a neurologist on staff at Good Sam. Sometimes it's hard to get in as a new patient, so try to do that asap before all the snowbirds are back. It really makes a difference. And they're really picky about which insurance they take. We have BC/BS right now and they do take that. FWIW, Michael's EP is Dr. Bahu at Biltmore Cardiology - same area of town. He's not the most patient listener, and he's not a POTS expert, but he's not bad. He's supposed to be the best EP in AZ. Having said that, the med changes that he's made have brought about the best improvement in Michael's POTS to date. Bahu is WAY better than the EP that we were referred to at Mayo. Ugh. Are you seeing Goodman at Mayo or someone else? Keep us all posted on your relocation and good luck! Dianne
  11. Hi Tilly, I'll add my 2 cents as a nurse. First, some people greatly notice their ectopic beats - while some people are totally unaware of them. If I am feeling someone's pulse, they sort of feel like a skipped beat, though a tiny bit different, so I imagine they'd feel that way to you too. Second, given that this is a new symptom, you need a doctor to be a bit more aggressive in checking this out! A 30 second ECG (and it's actually quite a bit quicker than that) isn't very informative for ectopic beats! While many types of arrhythmias are fine, others are not. Third, your thyroid can affect this as well, so if that's been unstable in the past, or it can certainly be affected by stress, that should be looked at. OTOH, you might be having thyroid symptoms under stress with the same thyroid test numbers with which you felt ok in the past (less stressful times). Hope that makes sense. Fourth, a sinus pause is not the same as an ectopic beat. It is literally a skipped beat. In either case, an ectopic beat or a pause, it is not a normal beat, so therefore your heart (and body) is not getting the same circulation benefit that you would get from a normal beat. So if they are intermittent, usually not a biggy, but if they are frequent, then you'll feel lousy - because your heart is not doing its proper work. Please press for a further workup - maybe a referral to a cardiologist and/or a holter monitor. You need someone to SEE what is actually going on before they can say "ok" or not. Good luck, Dianne
  12. V8 is a great source of both sodium and potassium. Be careful of potassium depletion. Since you have a fan, make use of evaporative cooling. Living in the desert, it's mind-boggling how cool (cold?) 80 degrees can feel when the air is dry and there's a breeze. So, staying in the breeze of the fan, wet your skin with a cloth, or keep a damp cloth around your neck. A quick shower one or more times a day just makes everything feel fresher. And for sure don't try to do very much - or anything at all. There's a reason for all those siestas in hot climates. Close every blind and curtain that you can to block out the sun. Good luck and stay cool.
  13. Mayo stopped seeing patients with Medicare at some of their primary care clinics. That is different from the kind of diagnostic or specialty groups that we are all talking about here. And they still accept Medicare at their hospital (ER and in patient stuff). I agree that you must contact Mayo to best understand their most current policy (seems to be evolving AWAY from medicare). POTSgirl's explanation seems right in line with what I read on their website. My question to her point is - if there is such good coverage with Medicare only, why would anyone pay for any secondary insurance to Medicare? However, since my husband has also been recently ill, we are at Mayo Scottsdale or Phoenix every week, and recently daily, and it is literally overrun with well-dressed elderly people. If they're not taking medicare, then Mayo must be the greatest concentration of wealthy, private pay patients in the world And at Mayo prices, they would have to be wildly wealthy. And if they totally stopped taking Medicare, then my guess is that they would lose 90% of their patients right there. LOL.
  14. Would love to hear more on this topic. We always say that Michael has the hyperadrenergic form of POTS because he has high NE levels tested at Mayo, and also the symptoms. But Dr. Low at Mayo never used this term - though the visit was back in 2006 and I don't recall hearing that term so much back then. Is Vandy the only one using it? How does it compare to the whole "flow" classification? What meds do people take to help deal with intermittent adrenalin surges, or as Dr. Low called them, autonomic storms ("storm" is a good word, imo!) Among other things, Dr. Low did diagnose "autonomic instability" - though I'm not sure what he based this on. Maybe the equivalent of adrenergic? He's going to see Goodman at Mayo Scottsdale next month, so will take Low's workup and ask him about it.
  15. Interesting point about the January visit. Michael's was also in January. We had to drive from Chicago and mercifully had no problems with weather. Other than the brutal cold.
  16. Have to agree with potsgirl. Just got an appt. with Dr. Goodman ourselves for the end of Sept. We could have had one in a couple of weeks but that didn't work for us. Michael is not a new patient, so that might make a difference, but I still think Goodman has good availability since he just moved back here from Rochester. The AZ Mayo website is also now (finally) saying that treating POTS is one of their services and lists Dr. Goodman's research interests as POTS. WOW! Yay! Michael saw Dr. Low rather quickly (weeks) back in 2004, when others were saying it was taking months and months. He had a referral from his EP, so don't know if that helped. The response that you got seems pretty unusual. Are you asking specifically for Dr. Low? Also, Michael was the same age and gender as Dr. Low's son who has POTS, so that might have helped too. Who knows how they choose.... Good luck to you. The appointment at Rochester was very helpful to understanding Micheal's POTS, but I can't say much for their follow up. Get all the info that you can while you're there.
  17. nunntrio, Sorry, don't know the diff between SPECT and PET, though Michael had both. I think they both have something to do with function, and both are quite different from MRIs. nowwhat, Happy to hear that you are liking Mayo and Dr. Goodman. If you see him again, say "hey" from Michael and family, former patients in Scottsdale. Michael is the 28 year old male whose heart had many sinus pauses at night. And we MISS HIM. Have not found a replacement yet. Sigh. Are thinking of maybe making the trek to see him at Rochester. Ugh. The trek, not him. He is the most incredibly patient doc I've ever met. And pretty sharp. Hoping that he tells you something useful. Dianne
  18. I'll quote the great guru, wikipedia, about shunting: A pulmonary shunt is a physiological condition which results when the alveoli of the lung are perfused with blood as normal, but ventilation (the supply of air) fails to supply the perfused region. In other words, the ventilation/perfusion ratio (the ratio of air reaching the alveoli to blood perfusing them) is zero.[1] They describe a shunt in the lungs, but a shunt can occur in other tissues, such as the heart or the brain. The bottom line is that there is blood flowing to the area (perfusion), but the exchange of oxygen and CO2 is not happening (ventilation). The tissue is just not being fed. Since the PET shows the working of the brain by showing glucose metabolism, the poor oxygenation would show up as hypo-perfusion or hypo-metabolism. I'm a nurse, but certainly not a neurologist (not even a neurology nurse so that's the best explanation I can provide. You can have a physiological abnormality, which would show on an MRI, or a functional abnormality, which would show on a PET, or both, or neither. Dr. Low's explanation made sense to us in light of Michael's abnormal PET/SPECT scans - which have no other explanation. BTW, his MRIs were normal. At least in junior high. Dianne
  19. I don't know about MRI, but I think the PET/SPECTs might be different. When Michael was being (mis)diagnosed with a seizure disorder, they did these tests, and found areas of low perfusion. At that time, they felt that was the location of his so-called partial seizures. When we mentioned this to Dr. Low at Mayo, he agreed that this would be likely with POTS. If I recall correctly, he indicated that there is a physiological shunt going on in POTS that takes the blood flow away from certain areas of the brain and helps to account for the brain fog. PET measures glucose metabolism, so it's more a measure of functional than of a structural abnormality. Dianne
  20. Just a note to add that homeopathy is totally regulated by the FDA in exactly the same fashion as any over the counter drug. You can check this out yourself by looking for an "NDC" number on the package. NDC means "new drug code" and shows that it is registered with the FDA. Regarding herbals, there is no need to be afraid, especially if you do just a little homework and use common sense. Many of the big name ones submit to regulatory standards - some to pharmaceutical quality ones, some to dietary supplement ones. So I guess I would say that MOST herbals from a quality company - think those that you might find in a store like Whole Foods - are what they say they are. They have a stake in their reputation. Not to say that all smaller companies are less reliable, but if I don't recognize the company as a top brand, I play it safe and stay away. And I also stay away from any company that makes claims that seem inappropriate in any way. If a supplement manufacturer makes ANY product that is an over the counter drug, then ALL of its products made at that facility will be made under pharmaceutical standards. One example of this is Enzymatic Therapy which makes Air Power which contains guafenesin, an OTC drug. If you look at that product, you'll see that the direction label looks like an OTC product and not like a supplement label. And it has an NDC number. And any company can voluntarily put itself in that category. Two that come to mind and state it on their labels or website are Nature's Way and Carlson Labs. There are many others. They will either say "gmp" (good manufacturing practices) or "FDA approved/inspected facility". When I used to be the owner of a health food store, I actually inspected my product suppliers - both onsite as well as their regulatory documents. As I used to work in the pharmaceutical industry in quality and regulatory areas and was in communication with the FDA, I knew what to look for. I'm not a special fan of Whole Foods, but their buyers will also have standards for product selection, just as I did, so that's why I mention their name here. Hope I wrote this clearly enough to be helpful. Anyone can PM me for further info. Dianne
  21. Has anyone found ANY meds that are helpful with these adrenalin shocks? My son has found xanax to be helpful, but his EP is reluctant to prescribe it as it is habit forming. He suggested taking a short acting beta blocker (on top of the Toprol XL that he normally takes). The EP also suggested trying an SSRI, but wondering if taking a drug every day is useful for a problem that arises only occasionally. Thanks, Dianne
  22. Hi Potsgirl, From your friend up the road in Phoenix.... Are you still seeing Dr. Goodman? How does that work out? When we were told he was leaving, there sure was no offer for follow up - just told to go back to Mike's primary - or to see Dr. Srivasthan in cardio. To Elizabeth, We very much liked Dr. Goodman - he sure takes his time and seems to be working on being a POTS specialist. Having said that, the meds that he had Mike on were not helpful - and since Goodman left, Mike is now seeing a less helpful EP, but who has changed his meds for the better. Can you get a local cardiologist and maybe see Goodman once a year? I'm starting to think that the combo of cardio and neuro is perhaps necessary. How nice to have the option of Mayo right down the road. Good luck, Dianne
  23. the good news about Mayo Rochester... all that's been said here. It's organized, efficient, "pretty", pleasant. "Minnesota nice" pervades the whole experience - inside Mayo and outside as well. Our son saw Dr. Low a few years back and we received information that helped us all to better understand his type of POTS. He was referred there by his EP and we were given an appt. with Dr. Low within a few weeks. We've also seen Dr. Goodman at Mayo Scottsdale and he has since moved to Rochester. They are both neurologists. Would recommend them both. Dr. Low is the guru and himself has an adult son with POTS (ironically our son's age). the bad news... There is virtually no follow up. You will leave with recommendations. Don't let the door hit you on the way out. When a local neurologist wanted to add mestinon to Michael's regimen, we sent a note to Dr. Low. Many weeks later he replied with a one line statement saying that would be a good idea. There is no avenue for follow up communication, unless your docs know a secret password. Or unless things have changed. Also, Michael has been doing better since seeing an EP cardiologist and trying Clonidine. Given all the posts here at dinet, we had asked Dr. Goodman to prescribe it, but he would not. Michael was on Inderal and mestinon, and having a very slow heart rate with both together. Very slow. This new EP has a fraction of the knowledge of the Mayo guys and seemingly little interest in gaining more knowledge - but he changed Michael from inderal to a long acting form of toprol and added clonidine and asked for a sleep study. So bottom line, while we learned many invaluable things at Mayo, the most helpful treatment has come from an EP who self-confessed he knows little about POTS. In fact, we would like to go to a POTS center again soon to get a review of Michael's care but this time I would look for someplace that is committed to follow up. Suggestions anyone?
  24. Hi Desperate Deb, Best of luck to you. Most of us have been where you are or somewhere similar. Our son was misdiagnosed for almost a decade before I figured out that he had POTS by coming across some of Dr. Grubbs published articles on the internet. Don't even ask what that poor kid went through in those 8 years, and even after that. I say this only so that you understand that those of us here KNOW and understand. Unfortunately, all too well. Anyway, back to you. Regarding the BP, Michael has the hyperadrenergic form of POTS and when he stands up, his pulse soars, but also his BP numbers get closer together - that's called a narrowing of pulse pressure. He starts to feel really awful, and if somehow he would not be allowed to recline, he'd pass out. Recently he had a horrid episode in an airport and the paramedics wanted to transport him to hospital precisely because of the narrowed pulse pressure which was 130/100. So you are correct... some people with POTS do NOT have a drop in BP. But a narrowed pulse pressure is what occurs just before one passes out (and the BP actually/ eventually does drop). I hope that's not too confusing. You can also have an elevated BP, in the same way that someone in shock has an elevated BP which is compensatory for their lowered blood flow. Bear in mind that there are MANY forms of dysautonomia, POTS being just one of them. As a nurse, might I suggest that you try to somehow categorize your symptoms so they don't look like a hodgepodge. Doctors seem to have a hard time handling more than one or two symptoms at a time. You might want to preface your list by saying something like you realize that there seem to be alot of disparate symptoms, but you don't want to leave anything out that might be significant to the doctor. Maybe say that you are totally confused by all these symptoms as you had been healthy and active until recently. I hope I don't sound as though I'm trying to make this your responsibility. In a perfect world, it would not be. But... the reality Good luck my friend. Let us know how it turns out.
  25. Had similar problems, even with water. They did an endoscopy and diagnosed esophagitis, so now I'm on a proton pump inhibitor and that helps somewhat. Definitely see a GI doc. Could be any of the things discussed here... or even something else. They also worked me up for cardiac issues and ruled that out. Good luck!
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