Possible Trip To Mayo?

[CC101]

Hey all my fellow POTsies; I hope everyone is feeling okay today. I have not been active on the site for quite some time and I think it is because I have been in some state of denial ever since I was diagnosed and then for the most part ignored by my “team” of doctors. I tend to get all emotional when I start reading the boards on here as I am overwhelmed by all the similarities and then tend to focus on the fact that I am surrounded by people who cannot grasp even 1% of what I actually go through on a day-to-day basis. When my doctors are included in that mix it makes it even worse. I was diagnosed back in 2011 but have only been treated for my tachycardia. My cardio seems to think that is all he needs to address, my neuro is clueless, and my general doctor claims to know what I have but never offers any advice or recommendations (it’s kind of like he feels that if he ignores it, it will go away). The closest physician that is on the DINET list is 3+ hours away which is not something I could commit to on a frequent basis. It is no surprise that with these doctors I have not had any of the typical POTS tests nor have I been placed on any of the typical medications besides a beta blocker. This is why I think I could find great hope by visiting Mayo. I cannot seem to find much information on the POTS clinic at the Rochester Mayo Clinic. Is this something I can actually schedule? How long does it typically take to get an appointment and how much time would I expect to spend there? Any information on this particular subject would be greatly helpful and appreciated. I hope that in the future I am able to get much more answers and help so that I can fully participate on this wonderful site. I do not know what I would do if this site did not exist; it has been my escape from feelings of isolation. Thank you to you all and may many spoons be sent your way!

[CC101]

Also, I forgot to add, is this kind of visit expensive? I checked the online page of my insurance carrier and it says that the Mayo in Rochester is in their network so I am wondering how that coverage would pan out? Did anyone end up with a very expensive bill? Thanks! =)

[Lethargic Smiles]

While Mayo didn't cure me, the trip gave me so many answers and I'm happy I went. In addition to the benefit of getting some answers, now local doctors unfamiliar with POTS still immediately take it seriously because doctors tend to respect the Mayo Clinic name.

I did a daily blog post while I was there in 2012. Here is a link to the page of my blog with all of the posts on Mayo in one spot. http://lethargicsmiles.wordpress.com/coping-with-illness/mayo-clinic-experience/

Here is a post of questions I got asked a lot about my visit to Mayo, including the costs. Cost will be different for everyone depending on what additional testing/consults are required on top of the autonomic clinic, but in my case, the bill was $20,000. Thank God for insurance!!! http://lethargicsmiles.wordpress.com/2013/07/08/mayo-clinics-autonomic-clinic-a-guide/

[amyksmith]

Hi -

Unsure if my response will help you, but I don't mind sharing my Mayo Clinic experience, for what it's worth. In summary, they gave me diagnoses (all with the same underlying cause auto-immune related autonomic dysfunction), their best guess prognoses and suggestions for possible treatments. But here's things in more detail, including the important money question.

First the logistics bit - your primary care doctor has to be the one to get you the appointment. Mayo will only deal initially with one of your doctors. In my case, I used my primary care doctor because she was caring, smart and had been referring me to all the different specialists, trying to get me some help. I did the initial research though - primarily through Mayo's website. I brought her the phone number and the Neurology contact people's names so she could make the initial calls. It goes down like this: your doctor contacts the Neuro group at Mayo and they will tell him or her what information they need or want to determine if they think they can help your case. Once they have reviewed the info, mostly test results, they will tell your primary care doctor if they are going to give you an appointment. You can't just call up and get an appointment.

After that it can vary how long it will take depending on a bunch of things. To reduce the amount of time it would take for my doctor to gather any information the Mayo neurologists et al requested, I made a huge packet for her. I collected a copy of everything I could. Basically I went to the different specialists I had seen and more or less (depending on the office) made an appointment with the receptionist/ medical records person/ nurse -- whomever and I made sure I had a copy of all test results, labwork, MRI results (get copies of the films too because if you go to Mayo they ask for original films on DVD or xrays and if you do it at the same time you won't have to drag yourself back again). I tried to compile as much information as I could so that if the Mayo doctors asked my doctor for something, she had it already and could fax it right to them. Doctors get busy and if you do this part yourself, it subtracts time from the process, because your doctor isn't telling their staff to contact other doctors' staff or hospitals or whatever to get copies of records, etc etc.

So the Mayo doctors and your doctor exchange information and then the Mayo doctors decide if they can help you and if yes, then your doctor gets a call and you get a letter (at least I did) that says they are going to give you an appointment and you'll get a phone call telling you when that appointment will be. In my case I got that call about two weeks later that gave me an appointment six weeks from that day. So I guess all told, it was two months from the point when Mayo neurology determined they could help my case possibly/ it was worth their while to see me.

Once you have an appointment date, you have to make arrangements to get there. They have an in-house travel agency sort of thing, but I just booked the tickets myself and called a hotel in Rochester. Unless you are medically unstable (ie, you would basically be arriving in an ambulance or something), you are not an in-patient at Mayo. So, you need a hotel room. Airfare and hotel are costs you have to pay out-of-pocket. Also your food, though if your situation is anything like mine (required Gastro stuff), you'll be fasting most of the time or on clears anyway.

When you check in, they hand you an itinerary of sorts. I met initially with a neurologist for about 20-30 minutes tops. Then you follow your itinerary. It tells you where to be when and so on. I had five days of feeling like a lab rat running around from test to test, lab to lab, etc. You are kept very busy - at least I was and there wasn't much, if any, downtime between tests so sometimes I felt utterly exhausted. Luckily this everyone there understands that and they are great about getting you wheelchairs from one test to the next, if you need it. But remember, there will be no wheelchair to your hotel, even if, as my hotel was, it is connected to the Clinic via a mall and network of hallways. It's kind of an unusual place.

Honestly, I felt awful almost the entire time. As in, much more awful than I had before I went because of all the testing. This might not happen for you if you don't have to do gastroenterology tests that require fasting etc. I start out hypovolemic and had some dehydration problems, but they would give me fluids after some tests at the Clinic. My more important point for this is that it was really challenging emotionally as well as physically at times. A wheelchair ride can help you, but for me at least, bringing along a supportive, caring friend was essential to getting through it. If you can, I highly recommend bringing someone with you whom you trust and who is very supportive of you.

After they have all the test results and labwork and so on, you meet with the doctor or doctors again and they review everything with you and then explain their diagnoses, the prognosis as best they can make based on their experience with other patients with similar conditions and sets of symptoms. BUT, and this is the most important thing I'd say, they do not have any ability to refer you to physicians near you who treat the diagnoses they give nor the treatments they recommend. They also don't necessarily recommend specific medications for your conditions, though I did get a list of recommendations.

It is really important to remember that you are their patient for five days (or that's how long it was for me) and that is all. Afterwards, they aren't your doctors and so it will fall on you (mostly) to explain what they recommend for your treatment to your doctors at home. Even if you have an interested doctor (and what Jackie M said about doctors taking much greater interest once you have this stack of papers from Mayo to show them is absolutely true), even if one of those doctors calls the phone number they give you if any questions arise, they won't necessarily get much from it. So, if your local doctors don't have much or any experience with autonomic dysfunction, it might not be the golden ticket, but it definitely helps.

I'm not sorry that I went. I had to go. I had a caring, great primary care doctor but was getting bumped around from neurologist to cardiologist and an array of other specialists with a long list of different diagnoses and I was only getting sicker. Mayo put a stop to most of that. But, I'll be honest it's been five years since I was there and it is still a struggle to get medical care because I'm typically the only patient with autonomic dysfunction my neurologist/ cardiologist/ gastroenterologist has ever had. I'm quite seriously considering moving closer to a medical center with physicians with more experience with autonomic dysfunction (mine affects multiple systems).

As for insurance.... on that Mayo is absolutely great. At the time I went I was still on long-term disability from work with insurance through Aetna. Mayo has an entire department that will help you get your insurance company on board. I had excellent benefits at my former job (I was in medicine) but I still had a lot of out-of-pocket expenses. The airfare, hotel and food like I wrote above - but beyond that I did end up with an out-of-pocket expense of $5700 for medical stuff. That's peanuts compared to what the five days cost, but it didn't feel like peanuts to someone on disability at the time. Mayo will do payment plans for you if you need. I ended up taking it all from my savings just to be done with it. But, I feel completely confident that Mayo got my insurance to pay for absolutely everything they could.

One final thing, the Clinic is not open Saturdays and Sundays. This means that if your initial appointment is on a Thursday (as mine was), and they have you scheduled for five days worth of tests, you will actually be stuck there for 7 days and you might not be able to fly out that last day, depending on the time of your appointments. So, ultimately I was there for longer. But it's just luck of the draw on appointment date and then everything else depends on how many tests they want to do on you.

Hope this is helpful. If you have any more questions you think I could help you with, ask away. Good luck!!

[CC101]

Jackie, that was so clever and nice of you to dedicate your blog to your Mayo experience. I am sure your blog has helped many of us POTSies. It was incredibly helpful and enlightening to read your detailed experiences of some of the tests that they run. Both you and AKS have made it quite clear the experience is exhausting but like I said before, since I have only had the tilt table test and a stress test for the heart, I am sure I would willfully suffer through it all as well just to get some clean-cut answers. I have definitely bookmarked your blog so that I can refer to it in the future. It was a big help; thank you!

Aks – Wow thank you so much for your detailed response; I appreciate it so much! Your recommendation on gathering all paperwork and required materials beforehand is great advice. Thank you for specifying that Mayo will require the original films or DVDs of any scans etc. as I am sure not many people will think to do that. I do have some awful gastro issues so I am not sure whether or not they would look into any of that. I was diagnosed with IBS-C as before getting on medication I would literally only have one bowel movement a month (if that) & when that happened I would become so sick that my body would produce shock-like symptoms and I would feel as if I needed to be rushed to a hospital. I would have to take 2 days off a work every month due to this but have now been blessed with some relief from this by taking a medicine called Linzess. I am curious as to what type of gastro tests they do provide or carry out. Has anyone else had some unique gastro tests here in the forums? For now I have resorted to the idea of trying to mimic what Mayo does by trying to get my doctors to follow similar procedures. Also Aks, did Mayo refer the same type of exercise routine as they seem to always do for POTS patients? I am really looking into buying my own recumbent/row machine. I am not sure if I will embark on the Mayo journey but maybe after probing my doctors for a bit longer I may find myself with no other choice. Once again, thank you both for sharing such detailed information. It was beyond greatly appreciated.

[amyksmith]

Hi -

So glad my longer-than-I-realized reply was helpful. I actually came here to tell you that one thing I wrote above is wrong/ has changed. But I'll tell you my gastro & exercise experiences too.

First the error....I was just looking at Mayo's website because my current neurologist wants me to go back for a re-evaluation for my symptomatic hypotension. At my original diagnosis (five years ago now), my autonomic dysfunction gave me the cardiac symptoms matching POTS. This has gradually become not the case, as is evident in retrospect and my neurologist only thought to check this because I had so many serious syncopal episodes in a short time. Basically treating the tachycardia doesn't at all help my symptomatic hypotension so I'm getting sudden drops in BP almost randomly (only real pattern is that I'm always either standing or moving upright, walking, running....). I black out suddenly and now have post-concussion syndrome which is sort of amusing since I've never been one for the type of sports that usually result in concussions.

Anyway that's why I was on their website this morning and I noticed that *if* your insurance doesn't require a referral, you can refer yourself now and you can do so via an online form or by phone. I don't know if they then require the same conversation with one of your doctors, but my guess is that they would. So, regardless of whether you start the process online yourself or your doctor does it by phone, I still recommend collecting as much of your own medical record as you can to make the process quicker.

Ok, so gastro.... My dysautomnia was sudden onset and is my primary disease; it's thought to be auto-immune in origin. That's just for context. So along with the POTS symptoms I suddenly had, I also had GI stuff going on, migraine headaches and peripheral neuropathy. "Sudden onset" makes it sound as though I was just walking down the street a-ok and then fell over with all these things at once. It wasn't quite like that, but it was a horrible month. So, the key thing is that I had no prior GI problems, nor diagnoses. I had never even seen a gastroenterologist.

So, part of my referral to Mayo Clinic from the very beginning included being seen by Gastroenterologists and having testing done by them as well. My GI symptoms mostly resemble IBS but not with constipation -- quite the opposite, including awful fecal incontinence. At Mayo I had an endoscopy, colonoscopy, biopsies taken on both the upper and lower scopes and then I had a bunch of tests related to the fecal incontinence that it doesn't sound like would apply in your case. Basically they were testing the nerves in my pelvic floor and various sphincters to try to see where the problems were exactly. Again, the reason this was all done in conjunction with my autonomic dysfunction work-up at Mayo is that the onset of my IBS symptoms coincided with the onset of my other symptoms of likely autonomic dysfunction.

If you go to the general Mayo website and click on Rochester, MN location (since you'd go there for the autonomic stuff), then go to the Gastroenterology & Hepatology Dept, you can search by your diasnosis (IBS) and/or GI symptoms and there's a list of "diagnostic tests" that they say they typically do when that condition is the suspected diagnosis. You can see what's listed for your situation and then know if there's anything different there than what you've already had done.

As for exercise, they recommended that I do a round of physical therapy as cardiac rehab. This was a tough thing to get any of my local hospitals (typically the location where cardiac rehab PT happens) to agree to since I had not had a "cardiac event" like a heart attack. Eventually my cardiologist got me into one. The reason they recommended this for me is that I had been very active prior to the onset of my dysautmnia cardiac symptoms and had been fainting without warning at times during my usual exercise. So, I had stopped prior to getting to Mayo and it was upsetting me. Mayo said if I did cardiac rehab it would basically allow me to exercise while all hooked up and monitored so that the docs at my local hospital's cardiac PT unit could monitor me and be alert to exactly what types of exercise I had to stop for my own safety and what was safer. Did I end up on a recumbent bicycle for what felt like ages? Yes. I did. And I had to wear a helmet. But I also figured out what my target heart rate ought to be while doing aerobic exercise which was completely different than prior to my POTS, etc. This meant I could return to *some* of my prior exercise preferences.

Historically, for me personally, movement makes me feel better since the onset of POTS. The difficulties were how to get going when standing up felt so crummy and then stopping or even pausing at times was my real problem. Once I could get going, I felt much better; but as soon as I stopped I had to lie down to prevent from blacking out - sometimes with warning signs/ feelings, but often with no notice. This meant that I had to stop running outside, switch more to walking and choosing places where there would be fewer obstacles that would require me to stop moving (traffic, etc I lived in a city at first - not anymore). It also meant that I had to agree to wear a helmet, a medical alert bracelet and carry a cell phone at all times, if I was going to insist on going running outside, because I still sometimes fainted without warning even on meds, etc.

Ultimately the safest way for me to exercise is on exercise equipment, specifically the recumbent type that's recommended for most POTS patients. I don't enjoy it and, depending on my BP before I start, I still often have to wear a helmet - but I have always had atypically uncontrollable hypotensive episodes for POTS. Or so I've been told.

BUT I have also taken Irish dancing classes, pilates and yoga. I could still go running outside in certain situations, hike, etc. But I had to know that I would feel totally unwell, even puke from vertigo before I got going and I absolutely had to wear my helmet and took lots of precautions to before and after. Most importantly I never ever exercised strenuously alone. This paragraph is in the past tense only because at the present I am not allowed to exercise at all, not even walk my own dogs, because of the changes in the cardiac symptoms of my autonomic dysfunction.

But, I fully plan to get back to exercising again. It's good to note that I didn't get those concussions because I was "cheating" and not wearing my helmet when I've been advised to do so. Exercising is really hard to start with POTS because you feel so crappy at first and it's hard to stay upright sometimes, but for me, and I'm only saying this about myself, once I got moving, after a while, I felt the best I ever felt. The most important thing of course is to be safe. This concussion stuff is no joke. I'm greatly improved from where I was six weeks ago with concussion issues lingering in my cognitive function, but I still have some problems. So, you know, definitely, definitely get your doctors' input before you go changing anything about your exercise. (For the record I do own a recumbent stationery bicycle.)

Hope this helps! - Amy

[kayjay]

I don't have too much to add except that I 100% recommend a mayo trip. I've been to Rochester 3 times and this year went to a satellite location just because it was easier traveling.

I am not "cured" but mayo by far was the most helpful, worth while medical intervention I've had. I left with a clear definitive diagnosis and a plan. My first visit was 5 years ago and I credit them with enabling me to have a better quality of life.

[Bigskyfam]

If I was close enough id go! Keep us posted.

[Natops]

I recall scanning through my insurance statement from when I went to Rochester Mayo Neurology – This one consultation… it lasted for about 3 minutes…. The doctor gave me some test results… told me he didn’t know what to make of it… wrote me a script for some medicine…. That consultation - $700.

[sue1234]

aks, regarding the fecal incontinence, have you been worked up for Chiari, tethered cord, and syringomyelia? Loss of bowel and/or bladder function is a sign of these. You would need a full spine MRI.

[kayjay]

Natops- that doesn't sound right. mayo doesn't operate like a normal hospital. The doctors get a salary and do not get paid more for seeing more patients. I've never spent less than an hour and a half with my mayo doctors. EACH and every time. I think you should call someone and complain. That's really unusual and not ok!

[sue1234]

I can say when I went to Mayo-Jax, I saw 3 doctors. My main reason to go, I saw an endocrinologist. His initial visit lasted around 30 minutes, follow up around 20 minutes.. He had me see a neurologist and that visit lasted about 20 minutes. Finally I saw a cardiologist, and that lasted about 15-20 minutes. I was not impressed with the motivation of the doctors I saw.

[Lethargic Smiles]

Rochester Mayo Neurology – This one consultation… it lasted for about 3 minutes…. The doctor gave me some test results… told me he didn’t know what to make of it… wrote me a script for some medicine….

Natops- that doesn't sound right. mayo doesn't operate like a normal hospital. The doctors get a salary and do not get paid more for seeing more patients. I've never spent less than an hour and a half with my mayo doctors. EACH and every time. I think you should call someone and complain. That's really unusual and not ok!

I agree with kJay that this isn't normal. We're you going through the autonomic clinic (the week long visit of testing and consults) or was it an isolated appointment with the neurologist?

All of the specialists spent a really long time with me, even if they didn't have much to add. If they didnt have something to add or were confused by a test result, they set me up with a specialist who could help. Each consult was definitely no less than half an hour and sometimes as long as 2 hours. Also, they all were consultations so none of the doctors prescribed medicine, they said they'd put in the report my home doctor should try me on a particular medication.

[CarrieJessica]

I just came home from my Mayo trip. I saw Neurology, Autonomic Clinic. This appointment was less than an hour.

I will say if you have the mindset of going for an opinion I'd say go for it. I went with expectations and was very disappointed. It was strange and confirmed that I am more than happy with Dr Randy Thompson in Pensacola.

[kitt]

Hi there,

I saw one of the two autonomic specialist neurologists seeing patients at Mayo MN 6 weeks ago and went through the 'pots clinic'. The testing lasted 6 days, and the bill was over 25,000. The autonomic specialist I saw there there manages the pots clinic and does a tremendous amount of research on pots and autonomic dysfunction. She's brilliant and discovered through very extensive testing that I not only have pots, but also neurocardiogenic syncope, NCS. Both are different forms of dysautonomia.

I had two different TTT's, one in the autonomic pots clinic that lasted precisely 10 minutes which proved pots and also a cardio TTT. During that TTT at 13 minutes my heart rate went from 70 to 30 with no discernible heartbeats in between. I passed out and my heart stopped beating for 7.5 seconds.

So I learned I not only have pots but also NCS, another form of dysautonomia. I'm also extremely hyperadrenergic, and both hyper-pots and NCS (both are forms of dysautonomia) ... both associated with being hyperadrenergic.

I've been to Mayo MN many times, had several surgeries there, and also was regular patient at Mayo in Jacksonville for over a dozen years.

Mayo MN has very very recently changed their policy on seeing autonomic specialists at the Mayo MN clinic. New patients will no longer see either of the two autonomic specialist neurologists. Sigh...

They have very recently decided to 'train' internists to evaluate dysautonomia patients. I've hesitated to share this on Dinet. It's a sad turn of events, and a reflection of how few dysautonomic specialists there are and the volume of patients seeking to be seen by an expert.

Please call the Mayo MN clinic and ask if you can see one of the two dysautonomic neurologist specialists, there were only two seeing patients, and as I said they are no longer seeing new patients, and this is a brand new policy.

I posted about my visit under a thread I started several months ago.

Wishing you the best on this!

K

[CherylR]

My daughter was originally diagnosed with orthostatic intolerance at the Mayo in Rochester in 2006. We had a week long stay and were sent home with a therapy program, which in retrospect, did more harm than good because it was all cardio. After a few weeks of therapy, we stopped because she was completely wiped out for two days after each 30 minute workout.

Long story short, we finally got a POTS diagnosis in 2008 here in New Orleans after a continual decline. We were considering a return trip to the Mayo in Rochester recently for a re-evaluation of POTS as well as other interesting symptoms, however, we decided not to go when we found out about the new doctors being trained to see POTS patients. We were being referred by our current POTS doctor. Even though my daughter had been a Mayo patient in 2006, we were told that she would now be a new patient and would have to wait about 8-10 months to be seen. We were also told that any person who has a POTS diagnosis would be put through the weeklong POTS clinic first before any other issues would be assessed and that was the reason for the long wait time. The POTS clinic in the cardiology area only scheduled two patients a week. The new POTS clinic that would be opening in the internal medicine department was going to start scheduling patients beginning January 2014. We were assured that we would be called sometime in January with an appointment date. We have yet to be called. When we checked in early November 2013, we were told that there were 100 people ahead of my daughter on the waiting list and that those on the waiting list would be called first to be scheduled in the new internal medicine POTS clinic. We have decided to focus our efforts elsewhere. My personal feeling is that Mayo is probably a good place for a diagnosis but if you already have a diagnosis and need a little fine tuning, I'm not so sure that it's the best place to spend your money...unless, of course, it happens to be exceptionally conveniently located to you.

[kitt]

Hi there,

I saw one of the two autonomic specialist neurologists seeing patients at Mayo MN 6 weeks ago and went through the 'pots clinic'. The testing lasted 6 days, and the bill was over 25,000. The autonomic specialist I saw there there manages the pots clinic and does a tremendous amount of research on pots and autonomic dysfunction. She's brilliant and discovered through very extensive testing that I not only have pots, but also neurocardiogenic syncope, NCS. Both are different forms of dysautonomia.

I had two different TTT's, one in the autonomic pots clinic that lasted precisely 10 minutes which proved pots and also a cardio TTT. During that TTT at 13 minutes my heart rate went from 70 to 30 with no discernible heartbeats in between. I passed out and my heart stopped beating for 7.5 seconds.

So I learned I not only have pots but also NCS, another form of dysautonomia. I'm also extremely hyperadrenergic, and both hyper-pots and NCS (both are forms of dysautonomia) ... both associated with being hyperadrenergic.

I've been to Mayo MN many times, had several surgeries there, and also was regular patient at Mayo in Jacksonville for over a dozen years.

Mayo MN has very very recently changed their policy on seeing autonomic specialists at the Mayo MN clinic. New patients will no longer see either of the two autonomic specialist neurologists. Sigh...

They have very recently decided to 'train' internists to evaluate dysautonomia patients. I've hesitated to share this on Dinet. It's a sad turn of events, and a reflection of how few dysautonomic specialists there are and the volume of patients seeking to be seen by an expert.

Please call the Mayo MN clinic and ask if you can see one of the two dysautonomic neurologist specialists, there were only two seeing patients, and as I said they are no longer seeing new patients, and this is a brand new policy.

I posted about my visit under a thread I started several months ago.

Wishing you the best on this!

K

I would not dissuade anyone from going to Mayo MN, but as I mentioned they've changed their policy. Buyer beware.

Do your research, and use this information to find out exactly what you're going to get, and who will be allowed to see.

I've always gotten very valuable information from Mayo MN and also from the Mayo in Jacksonville, but because Mayo MN has changed their policies very very recently on seeing dysautonomia patients...Please ask questions before you make the arrangements to travel and book a hotel.

Ask questions, and if your questions are not answered to your satisfaction, ask to speak to someone else and continue until you get the answers you need.

Best,

K

[kayjay]

I agree with Kitt- absolutely call and talk to Mayo. I'm not claiming to be a Mayo expert- but I've been to Rochester 3 times and will be going to Jacksonville for my 5th Mayo visit.

My only mayo regret is that I didn't go sooner.

[sue1234]

I know that Mayo can be an amazing place for people needing answers for complex health problems. I was not lucky enough to see the right providers when I went. I don't think POTS is quite their "forte". They look at it as black and white, and we have way too much grey mixed in.

[kitt]

I know that Mayo can be an amazing place for people needing answers for complex health problems. I was not lucky enough to see the right providers when I went. I don't think POTS is quite their "forte". They look at it as black and white, and we have way too much grey mixed in.

I'm sorry to disagree. They are one the leading researchers on dysautonomia in the world, with a VERY long history of treating pots... In depends on who you see there.

For those of you considering going, please reread my post.

Best,

K

[jamesldavis1]

Hi there,

I saw one of the two autonomic specialist neurologists seeing patients at Mayo MN 6 weeks ago and went through the 'pots clinic'. The testing lasted 6 days, and the bill was over 25,000. The autonomic specialist I saw there there manages the pots clinic and does a tremendous amount of research on pots and autonomic dysfunction. She's brilliant and discovered through very extensive testing that I not only have pots, but also neurocardiogenic syncope, NCS. Both are different forms of dysautonomia.

I had two different TTT's, one in the autonomic pots clinic that lasted precisely 10 minutes which proved pots and also a cardio TTT. During that TTT at 13 minutes my heart rate went from 70 to 30 with no discernible heartbeats in between. I passed out and my heart stopped beating for 7.5 seconds.

So I learned I not only have pots but also NCS, another form of dysautonomia. I'm also extremely hyperadrenergic, and both hyper-pots and NCS (both are forms of dysautonomia) ... both associated with being hyperadrenergic.

I've been to Mayo MN many times, had several surgeries there, and also was regular patient at Mayo in Jacksonville for over a dozen years.

Mayo MN has very very recently changed their policy on seeing autonomic specialists at the Mayo MN clinic. New patients will no longer see either of the two autonomic specialist neurologists. Sigh...

They have very recently decided to 'train' internists to evaluate dysautonomia patients. I've hesitated to share this on Dinet. It's a sad turn of events, and a reflection of how few dysautonomic specialists there are and the volume of patients seeking to be seen by an expert.

Please call the Mayo MN clinic and ask if you can see one of the two dysautonomic neurologist specialists, there were only two seeing patients, and as I said they are no longer seeing new patients, and this is a brand new policy.

I posted about my visit under a thread I started several months ago.

Wishing you the best on this!

K

Hi, I saw that you have hyperadrenergic POTS like me, I was wondering what you are taking for treatment? I read that Clonidine and Labetalol taken together are the right treatment, but maybe not?

[franziska]

Mayo has an amazing wealth of knowledge on POTS, and most doctors, even the ones who aren't POTS specialists are way more well-versed in POTS than other doctors. "Do your research" is excellent advice. Calling the patient services is going to be your best bet, since it seems that there has been a recent change in how the clinic operates. They are so super nice and knowledgeable on the phone and will give you all the information you need. You are looking for the Autonomic Neurology Sub-specialty group > http://www.mayoclinic.org/departments-centers/neurology/overview/specialty-groups/autonomic-neurology I would ask about a consultation, also inquiring on what steps need to be done to be taken as a patient. Be sure to call up your insurance company and figure out if this kind of visit is covered (most cover it, if you get a pcp referral.)

When I went to mayo, I was there for 1 full day (8 hours) of testing, coming back the next day for the consultation. I was seen at the heart rhythms clinic (not the Autonomic Neuro Dept). Mayo works out a whole days of testing for you, scheduling each test into a custom itinerary that gets mailed to you. I had blood work, an EKG, an echocardiogram, and a chest x-ray done. My consultation, done on a separate day, was a full hour long in which I saw one-on-one with a Dr who outlined POTS for me and gave me some treatment suggestions, as well as prescribed me florinef and midodrine. In my opinion, Mayo is WAY more holistic than any other clinic I've been to for POTS. I was given a wide range of treatment suggestions including the classics (compression wear, exercise, salt, etc). It is well worth the trip.

I am beginning to think about trying to get into the "POTS Clinic" (again, it's not actually a POTS clinic, but rather a specialty group that deals with all autonomic/ nervous system conditions), as my POTS runs a little deeper than what the cardio/hearth rhythms clinic could handle. I will try to remember to post back after I call up Mayo to ask about the Autonomic Neuro Department

Good luck!