kitt

Btw, on the 90 minute cardio TTT at Mayo MN they are WAITING for you to faint/pass out. If you don't pass out/faint in the first 60 minutes, they inject you with ISO, (isoproterenol) giving you an additional 'opportunity' to faint. I fainted at 13 minutes, my heart stopped beating for 7.5 seconds etc...So I didn't have to endure that.

(Yes, they are very, very well trained in CPR.)

Also, it is a fact that 7 out of 10 patients who go to Mayo who have been dx'ed with pots are not dx'ed with pots by Mayo.

As for the 10 minute autonomic TTT at Mayo, it is not only the heart rate that must exceed 30 beats in that 10 minute window, there are very specific BP requirements as well. I don't have my paperwork in front of me but I believe it's the systolic bp measurement that must decrease by a very big swing in that time frame as well. (Forgive me if I messed up the BP part, but it's a HUGE part of the Mayo MN 10 minute TTT.) An increase of 30 heartbeats alone doesn't cut it. Have to have the BP change as well.)

As for the 5 minute TTT? Here's something from Dysautonomia International about Pots, TTT's and 2, 5 and 10 minute intervals.

http://www.dysautonomiainternational.org/page.php?ID=30

Btw, I filled out a form from Vandy and they only wanted heart rate and BP measurements at one, two and three minutes. Go figure.

Oh, and Sue, as for 'best day' and TTT.... Mayo gives instructions about what not to eat or drink 24 hours prior, but obviously don't take in a lot of salt, caffeine etc...They require you to be off all medications for a great deal of time beforehand.

As for feet turning 'red and blue' that's not uncommon on a TTT, or in real life. Unfortunately.

At Mayo MN they also have an extensive 'Pots clinic' and do extensive testing for small fiber neuropathy. (This is only available at the MN Mayo) It's all good information.

Best,

K

The reason Mayo does two TTT different tests is specific.

(They know what they're doing btw.)

The ten minute TTT test is specific to pots. The cardio TTT is not.

A person can fail the 10 minute TTT and be correctly dx'ed with pots. A longer cardio TTT is looking for other issues. In my case I failed the ten minute autonomic TTT at Mayo MN, so have pots.

With the longer cardio TTT my pulse dropped to 35 at 13 minutes and my heart stopped for 7.5 seconds. I was diagnosed with a secondary form of dysautonomia known as NCS, neurocardiogenic syncope.

In a THIRD test Mayo measures catecholimes. Mine are extremely high, over 2500 so I'm also hyperadrenergic.

So my heart rate goes UP during the first ten minutes of standing and then starts to drop...Fast.

If you pass a 10 minute TTT, Mayo does not dx you with pots. They consider it an an arrhyrthmia. http://www.nhlbi.nih.gov/health/health-topics/topics/arr/

Don't shoot the messenger. I'm just saying these are part of their parameters of how they dx dsyautonomia, not just pots.

Good luck,

K

You can have a decrease of BP on standing and still have hyperadrenergic pots. You can also have a decrease of BP after standing more than 10 minutes and ALSO have NCS...Neurocardiogenic Syncope, another form of dysautonomia.

Both are associated with being hyperadrenergic.

You don't need to have one without the other.

Yes, hyperadrenergic 'generally' does not usually bring low BP to mind..generally high BP. A few of us on Dinet have hyper pots with low BP.

Having both hyper pots and NCS,,,Both with low BP is very unusual.

I had been DX with hyper pots, but recently a dysautonomia expert at Mayo MN dx me with both.

It is very necessary to have both an autonomic TTT to dx pots, and a cardio TTT to dx NCS, and only a catecholamine test can DX a hyperadrenergic state.

It's complicated, and can not be done with a 'one and done' test. Two different TTT tests and a standing plasma catecholamine test.

Best,

K

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

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

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 asked about this to an infamous Mayo dysatuonomia neurologist last month.

Asked 'What's with the headaches'...(We developed a shorthand way of communicating very quickly.) Her short response, 'No blood getting to the brain.' I understood the answer as quickly as she understood the question.

Asked and answered.

As for medications for these headaches, I've found Gabbapentin to be very helpful as this point. (May not be powerful enough in the future, but it's working now, and I stay in the present and focus on what's working now.)

Wishing you the best with this. Good luck.

K

I have to echo Jackie here and mention neuropathy....Random 'numbness' that comes and goes is often the first symptom of neuropathy.

Yes, numbness can also come from spine and disk issues, but with dysautonomia I'd get tested for neuropathy if it's not caused by Chiari.

Good luck!

Best,

K

I also have extreme issues with dry eyes and mouth. My dental hygienist pointed out that my tongue had changed considerably in the last year. Instead of being smooth she pointed out that it's not smooth and has lumps/bumps. She had to show me with a hand mirror and it wasn't until she showed me her tongue that I could see the difference.

My eyes are so dry I began awakening with my eyelashes 'glued together', I literally had to pull the upper and lower lashes apart each morning.

I went to a an opthomolist, (didn't mention dysautonomia to her, figured that would be too confusing) and after a through exam, she prescribed an expensive eye drop called Zylet. (50.00 with very good insurance)

She said it was NOT an infection, but Zylet contains a corticosteroid. I've found it to be exceptionally helpful, but am concerned that this is ongoing. Here's a link about Zylet...http://www.drugs.com/zylet.html

As I said it's been a lifesaver but I don't want to be dependent on it.

I also have small fiber neuropathy, pots, neurocardiogenic syndrome (NCS) and am also extremely hyperadrenergic.

So not quite sure how it all ties together with the dry eyes and mouth.

Also, Bellgirl, can you share more about the lip biopsy please? I have small very dark discoloration in the corners of my lower lip. My neighbor is a surgeon and standing out in the sun one day chatting he made the comment that my lip was discolored and could be a sign of gastrointestional disease. At the time I thought, "I have enough on my plate!" and have not pursued it, but am now wondering.

On a positive note I recently had a through workup at Mayo MN and went through 7 days of testing. I didn't mention dry eyes, mouth or discolored lip but they discovered the NCS and small fiber neuropathy!

Hope others might be helped with the information about Zylet. Also, if you feel you have 'dry mouth' ask your dental hygienist or dentist for their opinion.

Best,

K

Welcome to Dinet Risch!

It appears from your results your pulse did go up slightly over 30 beats in ten minutes but only your doctor can give you a dx.

As for having both pots and nuerocardiogenic syncope, it's your heart rate that plummets as does BP. Your heart rate did go down but you did not pass out.

I have both POTS and NCS, but my heart rate dropped much lower than yours and I passed out as well.

Again speak to your doctor and let him/her interpret your results.

Speak to your doctor, and good luck. Hope you feel better! In the mean time you might want to increase salt and fluids.

Best,

K

Hi, Just another suggestion but I have a Sportline heart rate monitor watch which came from Sports Authority and it's been incredibly accurate.

Best,

K

Hi Momofsix,

I'm sorry that you received this diagnosis! I think you'll find a lot of support on Dinet. Welcome!

I was recently seen at Mayo MN as well. You can sign in to your Mayo patient portal. Google 'Mayo patient portal' and sign in. There you'll find copies of medical tests as well as notes by all the doctors you saw.

You can pose questions to any of the doctors you've seen via a messaging system there. Mayo will be sending your doctor all of your test results along with their commentary. They will also copy you on this letter, meaning you'll be getting all of this information in the mail, meaning the exact same data they send your doctors.

I would suggest posing your questions to your neurologist there. Mayo is very capable of answering your questions. I also had both sweat tests done, and the thermoregulatory test that you spoke of where they sprinkle you with powder and put you in the hot plastic tent...The test that makes people without neuropathy turn completely purple...You should be asking Mayo if the medication you took affected the outcome of the test. (I'm doubting it, but ask.) Mayo is very through and I feel certain they looked at all your test results in combination to achieve that diagnosis.

The autonomic lab at Mayo MN is probably the most comprehensive autonomic lab in North America if not the world. (That test was invented by Dr. Low at Mayo.)

I wish you the very best, and use the Mayo patient portal! Most Mayo patients I know are not aware of it, so take advantage of it!

K

Thank you Corina for sharing that it is in fact a vasoconstrictor. I was having to read in between the lines of the studies I found. It is NOT approved by the FDA here in the states, and even if someone were to find a doctor to prescribe it off label for dysautonomia it's cost prohibitive. I've researched it and it's wickedly expensive, even if someone were to get it from Canada.

In other cases where drugs are cost prohibitive in the U.S. I know of patients who've gone to Europe and found a doctor to prescribe, gotten the meds in Europe and then brought them back to the U.S. That's an aggressive approach and I wouldn't do it with this particular drug, as I think it needs to be supervised, etc...

So interesting though! Am very glad it's helped you. Godspeed.

I wanted to share a new Vimeo. A new video about dysautonomia and features a Texas doctor who makes some bold claims which I think are a bit untrue but imagine there are several on Dinet who see this doctor or go to this Texas clinic. I think it sounds like a wonderful place to go, but it appears to me as though he's 'advertising' for the clinic. Would be interesting in hearing from anyone on Dinet who goes here? Overall though feel this is a good video about dysautonomia.

Also, he talks about 'research' they're doing. For the record the TTT tests he speaks of where they test normal people on TTT's has been done for years by Mayo. I know this for a fact. So this is not 'new' or groundbreaking research.

The Vimeo video is new though and it is about dysautonomia so feel it's well worth sharing!

Best,

K

Thank you Corina,

I have lots to share but I'd like to hear why octreotide has been your miracle drug? Did your doctor explain why it works, or at least why he/she thinks it works?

Let me say how glad I am for you that you've found a miracle drug. That's a giant step in itself. Am happy for you. Very, wow...Talk about a quality of life change. That's fabulous. Think the best is yet to come for you! Let's hope.

In the U.S. I've neither heard nor read of anyone with dysautonomia taking octreotide, but perhaps it's an FDA issue, and the way health care is managed in the states. Hope to hear more about it soon.

From what I've read, (and I'm trying to glean what I can from very complex medical articles), it seems to work in a 'secondary' way as vasoconstrictor. Is that true?...Would like to hear what you've learned about it.

Octreotide is not FDA approved here for dysatuonomia, and it's not mentioned in the off label uses. It's also pricey here. Am wanting to learn more though.

Thanks for sharing,

K

More to add, but have you Googled octreotide and dysautonomia? Pretty fascinating.

Corina, why was it prescribed to you? There is so much on this. It's unusual in the U.S. Would like to hear more. How are you taking it?

One article which B Grubb was an author on suggested it was undetermined if it was the heart or the vascular system it worked on. A topic which I find when I 'dig' into issues on NCS...Neurocardio Syndrome, another form of dysautonomia.

Here's one article on orcteotide. http://heart.bmj.com/content/97/Suppl_1/A89.2.abstract

Others..All interesting. Grubb is an author on many.

Corina, I've not heard of flares with bradycardia.

I have both hyperadrenergic pots and ncs at the same time, what seems like an oxymoron! Tachycardia and bradycardia at the same time. So on two different TTT's in as many days at Mayo, my heart went to 135 and as low as 30, when I passed out and it stopped beating for 7.5 seconds.

To pass out from NCS, it's not just a low heart rate but a very low BP that accompanies passing out...Mine went to 65/55, HR to 30 when I passed out and my heart stopped.

So both forms of dysautonomia can occur together. My resting heart rate is all over the map as is my BP as is my pulse. It's crazy.

So keep an eye on your blood pressure. As I said it always goes very low with NCS! Part of the equation. Do you keep an eye on it?

Chaos, It's 'crazy' in terms of scary. My heart rate fluctuates from 50 to 120 daily based on posture when I look at it. Am trying to 'figure it out' but it doesn't seem possible to figure out. Trying to take it one day at a time.

Corrine, good luck with your brady issues. What do mean by flares and coming and going....Based on anything you can determine? How low does your HR go, how long does it last and in what posture? You're not passing out but what issues is it causing for you?

Best,

K

I saw Dr. Sandroni at Mayo MN earlier this month and went through the pots autonomic clinic and visited other specialists as well there.

I failed the autonomic ten minute TTT at Mayo, (my heart rate went up more than 30 beats) so have pots, but more interestingly I also had a TTT in the Cardio department which is very different.

At 13 minutes my heart stopped beating for 7.5 seconds. (Obviously I passed out prior).

This is VERY unusual to have this result, and the DX was autonomic neurocardiogenic syncope. I asked Dr. Sandroni how often she's seen this, and she said 'Never'...Partly because my HR went from 89 to 75 to 33 beats per minute and then my heart stopped beating. No beats recorded on computers between 75 and 33.

So now not only do I have the tachycardia with pots but the bradycardia associated with neurocardiogenic syncope (NCS).

In the first 10 minutes of standing my heart rate goes up...Afterwards it starts to go down and sometimes plummets as it did on the TTT. The NCS is much more of an issue than pots.

The cardiologist I saw at Mayo suggested I have a pacemaker put in. I saw my cardiologist here who is also a surgeon and he agreed with me that we should 'wait and see'. The issue with NCS is that it can become an issue with driving, (getting dizzy with a low heart rate and passing out). A BIG issue.

It's complicated. Both pots and NCS are associated with a very high NE. Meaning I'm hyperadrenergic. Extremely. NE over 1350 sitting at Mayo and over 1400 over a year ago. (Over 550 supine for those of you you've been tested at Mayo.)

Best,

K

Good for you Sarah! You're doing a good job of balancing your new job and making peace with pots. Making peace with a chronic illness is a process, so be patient. Smiles...

Best,

K

Good for you CarrieJessica,

He may be returning to seeing patients or perhaps seeing patients part time. I've been in touch with the coordinator at Mayo who runs what they call the 'pots clinic' and it was she who told me only Dr Fealy and Dr Sandroni were seeing patients.

Dr Benorroch is one of Mayo's primary dysautonomia researchers. Both he and Dr Sandroni do a lot of research, and certainly Dr Low. Dr Low is no longer seeing patients, but still doing research.

I hope you have a good experience! I've communicated with another Dinet member who saw Dr Benorroch and she spoke of him very favorably.

Best,

K

Not working for me. Won't 'recognize' me or send me an email to confirm me.

Also, I tried Tinypic which has been a foolproof app for uploading pictures to any and all forums, emails etc...It too is not being accepted by Dinet.

Best,

K

Thank you Rachel,

This is a significant issue for me. I tried Gravatar, and it's not working. It will not recognize my email and password or send me an email to activate my account. I tried a gmail backup email and it also gave me the same issue.

The reason this is an issue for me is that I'm very visual and generally look at avatars to see if I want to read a post or NOT read a post. I associate avatars with posts that appeal to me.

Rachel, thank you for recognizing that Gravatar is not working, and thanks for trying to fix it.

Btw, I tried using Tinypic to resolve this, and even it would not work. I've never had a problem with TInypic for adding an avatar to a forum, email or any other issue.

So there's something not working. Thanks for working to get this resolved Rachel.

Best,

K

According to Dr Nancy Klimas, (an immunologist who specializes in CFS), she explained it to me this way when I asked about the relationship between EDS and pots. She summed it up with 'floppy joints / floppy vascular system'. She dx my pots (although not my hyperadrenergic state) but as a CFS expert she routinely screens for pots in her CFS patients due to the high viral load many CFS patients carry. There is a strong relationship, and yes Dr Peter Rowe at Johns Hopkins is responsible for much of the research on the relationship with children who have both EDS and CFS.

Agree that meds are often necessary or helpful. I went off all pots meds when I got an appt in November to See Dr. Sandroni at Mayo MN in January. Stopped both Methyldopa and Clonodine cold turkey...that day in Nov.

I don't think they were the right meds for my hyper pots anyway, and felt the side effects of Methyldopa in particular was not worth it! Had problems with the small amount of Clonodine I was taking also but simply feel there will be a better combination of meds for me. Have the odd combination of having hyper pots with low BP. (I know a few others here present that way as well.)

Ironically, I don't feel that much different being off the Methyldopa and Clonodine. I felt lousy on them and didn't sleep, and I still feel awful and am not sleeping. Went off the meds when I did so as to be in as natural a state as possible for the upcoming testing.

Hoping the testing etc...they do will help her to come up with a better combination of meds.

On another note though, I'm one to 'abandon' a medication if I don't feel it's helping after a reasonable amount of time.

Best,

K

It does sound crazy! I've found Quest to be difficult with a few tests including the standing catecholamine tests.

Instead I called my insurance co and learned that I could go to the hospital lab for the tests I needed. A whole different level of understanding, care and concern over Quest Labs. Also, the hospital allowed to pick up a copy of the test results as well as sending them to my M.D.

Maybe they can help you? I sure hope so! Have you asked your geneticist what lab usually performs these tests?

Good luck. I've never had to think which color code the top of the vial had to be. That alone is too much to expect a patient to know. The rest of the story is amazing. Thank goodness for the woman who sent you a single vial!

Best,

K