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Everything posted by momdi

  1. Our dentist also arranged to have Michael's cleaning done as the last appt of the day so that the hygienist could take as much time as needed, giving him "breathers" as needed. Even offered to split it up into 2 appts if needed (no pressure to get it all done), but it just went to one long appt. Also scheduled it at a time when there was only one dentist there (instead of the usual 2) so there was less overall "noise" in the office. And for cavity repair, she's offered Rx for xanax and also offers nitrous. Haven't made it to the cavity filling yet, but the cleaning went as well as could be expected. Yep, she's a wonderful dentist. Wish we could clone her into a doctor ;-)
  2. My son took only 10 mg/dose. If you're having side effects, definitely consider trying 5 or 10 to start. When he was taking 20 twice a day plus mestinon he was having all kinds of slow/stopped pulse issues. Good luck.
  3. Totally agree with potsgirl. If you can swing it, stay in one of the connected hotels. Save your energy for your medical stuff, not for schlepping back and forth. WE were told that time estimate as well, but ended up having only 2 days of tests. So we stayed a total of 3 nights. I think we stayed at a Residence Inn, so we had a suite. Michael brought his cat. The 2 bedrooms were "priceless". Unless things have changed a lot from 2006, my advice is to get every question answered before you leave. Their information was absolutely invaluable to us in giving new understanding to Michael's form of POTS (high norepinephrine) but once you're out the door, you're done. It's a place for a megadiagnostic work up, not for continuity of care, in our experience. Michael was seen by Dr. Low, the head guru there. Dr. Goodman, who used to be Michael's doc at Mayo Scottsdale has moved back to Rochester. They're both good in their own way. Good luck. Hope you find something helpful there. You can pm me if you have any specific questions.
  4. Trying to fly home after a nice family visit, we all had to leave the airplane as Mike had an overwhelming POTS episode and was near to passing out. Being wheeled off the plane, being the center of attention in the terminal, then taken by ambulance from the airport, and ending up in the ER was not the airport experience we had planned, but the question here is.... In the ER yesterday, Mike's white blood count was 22,000 and his temp was 101.5, and his lying down pulse was in the 120s (when he sat up, it went up to 140-150). They couldn't find any source of infection - negative strep, flu, chest x-ray, urinalysis. So no obvious sign of infection. The QUESTION is - can POTS itself cause such a high white count? And temperature? Mike feels a bit better today - fever better but not gone, pulse near normal - and would very much like to try to fly home again. He is wondering if this could all be due to a really really bad POTS attack. What do you think?
  5. Hi Elena, My heart aches for the confusing time that you are having right now. Michael spent many years with a mis-diagnosis of seizure disorder. They had a hard time locating the precise focus inside his brain, but one neurologist said, looking at his EEG... if this is a normal child, this is a normal eeg; if this is a child with a seizure disorder, (pointing to a spot on the eeg) this is the site of the seizure. I think that's when I started called neurology "voodoo medicine". And I'm a nurse ;-) Michael did have abnormal brain scans, CT, pet and spect. The MRI was normal. The abnormal ones said there was decreased perfusion and metabolic activity. At the time, they decided that must mean that they had found the source of the "seizures", which they were planning to remove with a pretty dramatic partial lobectomy. Luckily, we didn't go with that option.... Of course, I have no idea if you have seizures or dysautonomia. I'm sharing this story to point out that there seems to be some confusion in the area. And Michael's experience was at the epilepsy center of a top private teaching hospital in Chicago. Good luck to you with your diagnosis. This isn't easy, that's for sure.
  6. Some years back when they thought Michael had a seizure disorder, they did numerous scans - both the pet and spect showed diminished blood flow to certain parts of his brain. At the time, they saw that as confirmation of the location of his so-called seizure disorder. When we mentioned this to the Mayo docs, they were not surprised, saying that POTS creates a sort of physiological shunting of blood flow to the brain. Assume that's the mechanism behind the brain fog that so many of you experience.
  7. Michael saw Dr. Low back in 2006 and we were very pleased with all the information that we got then. Here in AZ, MIchael was followed by Dr. Goodman for a couple of years. Very sadly for us, Goodman has returned to Rochester (so we're looking for a new POTS doc) - but I echo Jana's comments - Dr. Goodman is great. He has a very patient, methodical way about him - you definitely will not feel rushed. He's more of a listener, imo, while Low is more of an information-giver. Hope that is helpful.
  8. Been trying to get into this chat for some time. Has anyone been sucessful at getting in? Has the chat been canceled?
  9. Hi, FWIW, Dr. Low at Mayo told Mike that his was a case where more salt would improve his HBP. With a high heart rate, high BP, low sodium, low water, Mike's high BP was compensatory for low sodium and low fluid volume. Increasing the salt and fluid would decrease the BP. And it did. He also takes a beta blocker, and yes it does increase fatigue, and there was a problem with a very low heart rate. So that dose was cut in half from 40 mg to 20 mg. Good luck,
  10. OOps, didn't intend to make it sound worse than it already is. Mike takes inderal and has some refills available for the 10 mg dose, but he typically takes 20 mg daily and it's the 20 mg dose that needed a refill. There were some other negative parts of the situation that I don't need to go into here, but being left with NO meds at all was not one of them. Thanks to all of you for your help. Tucson might just be the best answer for cardio. I have a new doc in Phoenix that we'll try for a primary. We never had much look getting a good primary in Mayo. The last primary tried to "fix" the POTS with a bedtime prescription of Xanax (which Dr. Goodman totally nixed). According to the primary, that would cure his sleep problems so that he could get up in the morning and get back into school. The "better to laugh than cry" part was when that doc advised Mike that whenever he had difficulty getting up in the morning to just force himself to stand upright. I guess on the premise that if you're standing you can't be asleep at the same time . That would keep him awake! Orthostatic intolerance anyone??? Duh!
  11. When we asked the pharmacy to renew Mike's bb Rx, we got a phone call from a nurse at Mayo Scottsdale saying that they could not do that because Dr. Goodman was no longer there. He's relocated to Mayo Rochester. I don't know if they are planning on telling their patients in a more professional manner than... too bad, can't refill that prescription... but for anyone here in AZ, I wanted to share the news before you get blindsided like this. I was in a store when I got the call, and literally started to cry. She then went on to say that the neuro dept would not be following any POTS patients, so we need to get back in touch with Mike's PCP (a bad choice) or cardiology (an even worse one). Only you folks here can imagine what we went through to find Dr. Goodman in the first place. And I've been all over every hospital web site in AZ, combing the listings of electrophysiologists and neurologists for anyone treating POTS or OI or autonomic disorders... no luck. Anyone have any ideas?
  12. future hope, could you please link to the post on suggested exercises? I tried the search function and there are way too many to be helpful. many thanks, Dianne
  13. Sorry Ernie, I meant to respond to this question as well in my last post. IMO, Low is very good at selecting the appropriate tests. He didn't just throw a bunch of tests at us - every one seemed to have a clear purpose - and as a retired RN, I'm generally pretty critical of doctors' approach to diagnostics. To make me happy in this regard is saying a lot. Again, that's why you need to be very sure that the history that the fellow takes is as clear and accurate as can be. Mike had the norepinephrine blood test, 24 hour urine for volume and sodium, a tilt table test, and the sweat tests - aka "shake and bake". I think the tests will depend on your specific issues. Again, if you have any specific questions, you can pm me. Dianne
  14. Ernie, When we went to Mayo Rochester we considered driving vs flying for the 3 of us. It was only from Chicago, so quite a bit different from your experience, but we drove because.... We were able to take Mike's cat - very noisy for a good part of the trip (meow meow) but a great comfort to him while we were staying at the Residence Inn (which we recommend). In addition to the kitty, the car enabled us to take all the comfort items for the multi-day stay. Everything is available at Mayo, but brought from home is much cheaper. Would have had to rent a car anyway as Rochester is over an hour drive from Minneapolis. There's probably some kind of shuttle from the airport, though, and once you're settled inside the Mayo campus with all their tunnels, you do not need a car. Though it can be convenient for running out for forgotten items ;-) Airplane travel would have been harder for Mike than the car trip, but then again, ours was pretty much a days drive, not 20 hours. We factored in an extra day and got there a day early. Helped Mike and us to settle in before the Mayo drill. And also no worries about winter storms delaying us. If you have any other Mayo questions, be more than happy to help.
  15. Could I ask what type of POTS you have? One of Mike's consultant docs recommended Effexor - I guess similar to Cymbalta - but he's been reluctant to try it. His main POTS doc has no experience with it, so no help there. Any comments anyone on Cymbalta vs Effexor?
  16. Hey Ernie, Great news that you will see Low. Overall, Mayo Rochester is an amazing experience. Everything is highly organized. Facilities are lovely. Everyone is polite. Volunteers are everywhere and eager to help out. We got more information (and compassion) from Low back in 2004 than from anyone. He was able to help us understand the different aspects of Mike's POTS. I know that you're very experienced in seeing docs, but here's my 2 cents. A fellow will do the history and Dr. Low will go by this. As no one gets it 100% accurate, when Dr. Low is reviewing that history with you, be mentally prepared to jump in with any corrections/additions. Be prepared with all of your questions during your wrap up meeting with Dr. Low. While they do a great job at the time, unless something has changed dramatically, follow up is near impossible. About one year after our visit, and after a lengthy delay, we received a very brief answer to our question about trying mestinon. Mayo is outstanding about giving you copies of your medical records, but to make things easier, be sure to gather everything you need from the visit before you leave Mayo. Looking forward to reading your report. And good luck!
  17. ditto on trying zofran. It finally got my son discharged from the hospital 2 years ago after a long and nasty week. it's also available IV, if you can get a doc to try it that way. of course, as many other posts point out, finding and treating any underlying problem is always the best.
  18. Highly suggest you start at a MUCH lower dose. People with myasthenia gravis use mestinon at doses of 600/day, so the very small doses of 30 to 60 per day used for POTS patients seems very low to the docs. Going on and coming off mestinon can mess with your GI system - the key is to keep the dose low and go slowly. You can always ramp it up if you don't have any problems.
  19. Firewatcher, thanks for the info about the timing of inderal, and Rachel, thanks for the info about taking it irregularly. Ernie, thanks for your encouragement. The docs have always said the more regular the better, but I think that's just a knee-jerk, doctor thing to say. Both these docs are alleged POTS specialists and they are both at the same high profile med center. I put a call in to the neuro's nurse, and hopefully he's supposed to talk with the EP and get back to us. So we'll see. It just seems so odd that the advice was almost totally against everything we've heard and everything that Mike's been doing. It's hard to know if this EP is in on some cutting edge stuff or if he just treats his patients like guinea pigs for his own theories and sits back to see what happens. Sorry to be so cynical, but we've been in some pretty snarky medical situations over the past decade at some high level medical centers.
  20. Agree. My son has hyperadrenergic pots and his supine heart rate is very low. It's the blood levels that are diagnostic.
  21. The EP cardiologist is recommending effexor for hyperadrenergic POTS. Heard so many nightmare stores about it and other SSRIs/SNRIs, that it's a little scary - ok, a lot scary. When Mike was (mis) diagnosed with a seizure disorder, he had horrible side effects from those nasty anti-seizure drugs, so we're especially concerned. Just wondering if anyone has had good luck with it, especially over a long time, and any helpful tricks for adjusting to it.
  22. My 26 year old son has hyperadrenergic POTS w/ high levels of Norepi. He's been on low doses of inderal and mestinon, and started having really low pulse at night. A holter monitor showed that his pulse was dipping into the 20s and his heart "paused" 30 times. So, his meds got drastically pulled back (stop mestinon, cut way back on inderal) and got sent to an EP. BTW, his pulse and heart pauses improved w/ the dose cutbacks. But the EP said.... 1. Don't take beta blockers - they make you feel better but they're not good for your POTS. Like taking tylenol for pneumonia - you feel better but you're not better. 2. Start back on mestinon. (His neurologist was going to stop that b/c he felt that recent data wasn't showing the hoped-for benefits. Mike does not notice a benefit from mestinon.) The EPs response to that was that he was not salt loaded enough to benefit from mestinon. So the EP also prescribed 12 salt tabs (500 mg)/day, in addition to his already super high salt diet. 3. Only isometric exercise - NO other exercise including swimming (which Mike loves and has a backyard pool). 4. Start on effexor. So our questions are.... I've never heard that BBs are not good for POTS. Anyone else here of this?? Effexor seems kind of scary - lots of side effects reported on this forum + withdrawal issues. I've never heard that exercise (other than isometric) is bad for POTS, especially swimming. Help! WE are so confused!
  23. Adding my 2 cents to start with a low dose - 30 - 60 mg - and gradually work your way up. Your GI system will need time to adjust, and only you will know the right adjustment. Like so many meds for POTS, it's a fine line between side effects and beneficial effects. The docs are currently taking my son off Mestinon, as they're saying that the current research is suggesting that it isn't really helpful, as they had initially thought it might be. I don't think he ever felt that mestinon helped, and since he's lately been struggling with a very slow heart rate (20s) at night and what they call "sinus pauses", they took him off it more quickly than planned. Be aware that it might act synergistically with your beta blockers - which of course, is the point ;-) but that might create more of an issue w/ your asthma. And ditto - talk to your asthma doc. Hope that you find it helpful.
  24. I can't locate it right now, but in Dr. David Goldstein's book, "Adrenaline and the Inner World", he talks about the increased stress on the autonomic nervous system (so, increased neurotransmitters) whenever mental concentration or effort occurs.
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