Mayo Visit - My Experience

[ACB]

I'm at Mayo this week for POTS testing and thought some people might like to read what my visit has been like.

I don't have my schedule with me right now, so I'm just going to do my foggy best to recall what testing I've had so far.

Monday started at 6:50a with a blood draw. I then received what I would describe as a convenience store counter sized pickle jar container and a 12-oz cup to collect my urine for 24 hrs. I scoffed at the size of the container initially, thinking there was no way I'd need that much space for my urine. Boy, was I wrong. From there, I had an EKG, an echo, a chest xray, and a QSART (during the QSART testing period, I also performed the Valsalva maneuver, did a deep breathing thing, and had a 10 min TTT). I also wore a 6-hr BP monitor that took my BP every 10 min. That's a lot of testing!

Tuesday, I had a thermoregulatory sweat test, started a 24-hr Holter monitor, and met with the POTS nurse who took my history. The TST was incredibly interesting (and super uncomfortable). I watched most of my body change from gold dust colored to dark purple under heat lamps while listening to Johnny Cash. They pipe in music. Listening to Ring of Fire while feeling as though I was close to suffocating inside a literal ring of fire was surreal.

Wednesday, I had a 45-min TTT during which I did not faint, so isoproterenol was administered and I continued the full 15 extra minutes on that without fainting, as well. I did cry, have strong palps, and strong dyspnea. I also had a big burst of energy with facial flushing before the isoproterenol was started, so I wonder whether that helped me power through the drug. The nurse appropriately said he did not know whether that could be the case.

Tomorrow, I'm scheduled to meet with a neuro and a cardio for feedback. Seems like I'm also scheduled for some exercise training with a PT.

Friday, I'm scheduled for part two with the PT and a follow up with the nurse to go over everything as a whole.

Hope this might help some people who may be considering Mayo and would like a better idea of what could be in store. This was what was scheduled for me given my history and symptoms. I'm sure it varies for everyone, but there should be considerable overlap.

[nunntrio]

Thanks for posting about your experience. Let us know what they say.

[HopeSprings]

Wow, sounds very thorough. I don't understand the part about not fainting though - you said, "Wednesday, I had a 45-min TTT during which I did not faint, so isoproterenol was administered..." Why are they trying to make you faint? Please let us know your results and what they recommend.

[lieze]

Hang in there-it sounds like they are putting you through the wringer there. : )

[derekliz]

Best of luck with all the testing. I hope and pray you get the answers you are looking for!

Liz

[ACB]

Naomi, basically, they were looking to bring me to the point of experiencing symptoms up to a faint to see what my BP and HR did. I was supposed to alert them when I was about to faint so that they could end the test before I did. I never began to feel lightheaded or have any presyncope feelings during the 45 min, so they continued with the isoproterenol to induce further symptoms to see how my HR and BP responded.

I probably wasn't clear about that in my original post. I just expected to faint, because that's how I responded on my first TTT back home after Isoproterenol admin.

[HopeSprings]

Ohhh- gotcha, makes sense.

[sue1234]

Thanks for posting all that info! It helps me realize that I've had everyone of those tests, except the sweat test. I would not make it through that anyway, so I'm okay not having had that done!

[ACB]

The diagnoses I received were hyperadrenergic POTS and peripheral neuropathy. Thanks to all the info here and all the scientific article reading I've been doing over the past year, I was expecting both.

I can't remember my norepi levels off the top of my head, but resting was WNL and standing was near 1000. I got the neuropathy dx based on the finding from the TST that parts of my hands and feet don't sweat. I also have uncomfortable symptoms in them (i.e., freezing cold, burning hot, tingling).

My urine output was good, but sodium was lower than what they recommend for POTSies, so I'm to add 1g of salt daily and have another 24-hr urine test in 3-4 weeks to see how that helps. It was also recommended that I continue to wear my compression hose, resume the exercise protocol I'd been doing (more on that in next paragraph), and try propranolol or nadolol.

I'd been doing Levine's 3 month exercise protocol, finished it and started a second 3 month protocol his PT shared with me. That one has not been studied and had me doing interval training. After a couple weeks of doing intervals 1-2x/wk, I started getting worse and developed a superficial blood clot in my leg that I'm still having trouble with! The Mayo docs said I should return to the protocol, but start from the very beginning and then don't move on to the intervals, because they might have been too much for my body to handle. Dr Allison (head of the cardiac exercise research at Mayo) also recommended that I either wrap or wear light knee high compression over the vein that's giving me trouble while exercising. I was so glad to hear some kind of idea about how to deal with that. I've not exercised since early Sept and my symptoms have been returning big time, so I'm very eager to get back into it.

Interestingly, Mayo does not recommend a target HR for exercise like Levine. Instead, they recommend working at a perceived rate of exertion between fairly light and somewhat hard.

I started 10mg propranolol 2x/day today and it has helped all my symptoms to some degree, but has caused dizziness. It was recommended that I try various approaches to taking it to see what will work for me. I'm thinking that splitting a pill tomorrow might be the right approach. See if it will still help, but decrease the dizziness. We'll see. I really wasn't expecting it to do much, but have been very pleasantly surprised with how I've felt today.

[juliegee]

ACB-

Thank you so much for sharing. I'm sure that took an incredibly amount of energy to record all of this, but many of us have learned from you. Let us know how you fare with the new meds & resuming exercise.

Julie

[jem15]

Yes, thanks for sharing. I've always been so curious what exactly Mayo does with patients like us cause it's so impossible for me to get there, just dont have the physical or financial ability, but if they were miracle workers, and had some secret cures up their sleeves, I'd desperately try to find a way.

It looks like I've had most of the testing that they did with you, and I've already tried all the basic POTS meds.. betablockers, midodrine, mestinon, florinef, and compression stockings, fluids, salt, etc.... and unfortunately nothing has provided any relief.. so I'm not sure that Mayo would have any other answers. It helps me to know though that they seem to be doing the basic stuff there, so it's not like they have a ton of special testing that I can't get done locally, or magical drugs or suggestions that I havent heard before. Ha, I was kind of hoping they would at first, they always seem to be talked about as a magical place where the hopeless can get help, and I'm sure, for many this is the case.. but at least in terms of POTS, from hearing your post and others I've read in the past, it doesnt seem worth the physical strain and huge financial risk. So thanks ,your post was helpful.

Also, I'm considering trying the Levine Protocol, even though my one POTS dr was against it and thought it too extreme.. ha, which I agree, does sound the case, I really dont know how I'd handle it... but.... I"m just curious how symptomatic/disabled were you when you started his protocol? Were you unable to work/go to school? unable to drive? What was your functioning level like and how much did it improve by the end?

[anaphylaxing]

Thanks for sharing!

I'm at Mayo and they've said I had POTS but I haven't been referred to the POTS docs because I'm on steroids so they wonder if it's masking or aggravating things so want me to go back home. I just don't know if I'll ever be able to come back it was such a fight to get here.

[anaphylaxing]

what were their thoughts on your peripheral neuropathy? Did you have any abnormal testing related to that? What symptoms do you have?

[ACB]

Caterpilly, you're right. Mayo does not have any special cures tucked away. In fact, I was advised to continue doing everything I've been doing since last Feb or so with the exception of trying propranolol. My husband was pretty miffed about the visit at first, because he was expecting some new options. Fortunately, I knew (from dinet!) that wasn't gonna happen. I did feel good about having the extensive testing done there, though, because the only thing I'd had done prior was a TTT. At Mayo, I knew people would know which tests I needed and how to interpret them (as well as anyone can "know" those things for POTS).

The Levine protocol was tough at times. And, it may be too extreme for you. Who knows? In my case, I've found that I really don't know for sure until I try things and see how they go.

By the time I received the protocol, I was at my worst. I was in a wheelchair when I left the house due to presyncope and not wanting to faint in public where it could be dangerous. I was too fatigued to drive or care for my son appropriately. I was couch bound and felt exhausted walking to the bathroom from the couch (and our house is <1000 sf!). We hired a FT caregiver for myself and son in Jan and I began the protocol in May. Initially, the caregiver drove me to the wellness center and wheeled me up to the workout area. She then returned to pick me up when I was finished. It was rough.

The first month of the protocol, I didn't notice any changes. The second month, it was sorta like two steps forward one step back. By the end of the third month, I believed that I was going to be able to manage my POTS with exercise and cancelled an appt I had with Mayo at that time. I think it was sometime in the second month of the protocol that I was able to ditch the wheelchair.

I hope this info helps. If I can answer any more questions, I'd love to.

[ACB]

Anaphylaxing, the ANS specialist said that for most, PN does not continue to worsen. There was no talk of looking for the cause or trying any meds at this time. That's cool with me.

The PN was diagnosed by a thermoregulatory sweat test (TST). I didn't sweat on my toes, and several other foot areas, on my fingertips, and on my right knuckles (the knuckles can be a pretty normal place to not sweat).

My PN symptom progression has been like this - as a teen, I developed periods of painfully cold feet that would sweat a TON and my hands were occasionally uncomfortably cold. I've had those symptoms my whole life. At 34, my feet have gradually stopped sweating excessively and now sometimes burn rather than turn cold. My hands sometimes burn instead of feeling cold, as well.

So, over about 20 years my symptoms have not changed that drastically. As long as things don't get too painful, I'm just going to roll with these symptoms. However, if problems do increase unmanageably, I'll probably go for another TST to see if the neuropathy is getting worse. I'm not a big fan of taking lots of meds, so this approach works for me.

[anaphylaxing]

Thanks! Do you know why they decided on the propanolol? was it your rate or your symptoms? I really hope you see some great results!

I have tingling/numbness in my hands and feet and wondering if its related to POTS/peripheral neuropathy....

Would you be willing to share the exercise protocol you are using or are you not allowed to?

[ACB]

The ANS doc suggested propranolol as a first attempt, because it often helps with hyper POTS. Also, it crosses the blood-brain barrier and may help with cognitive symptoms. I have brain fog and really bad sound sensitivity, which he attributed to my brain (CNS) more than ANS. So, propranolol seemed the best to try first.

Interestingly, the exercise protocol they recommended I do is the Levine protocol I'd done in the past. It (the studied, 3-month protocol) worked really well for me, so they advised that I redo it from the start. If you're interested in obtaining a protocol, I highly recommend contacting Levine's crew via your doc.

[potsgirl]

ACB,

Which Mayo Clinic were you seen at? Rochester? It sounds like all of the tests that they put me through in Rochester, MN. Very thorough.

[ACB]

potsgirl, yes, it was Mayo Rochester. I was there for a week - three days of testing, two days of consults.

[HopeSprings]

ACB - could you keep us posted on your experience with the Propanolol? I want something for tachycardia, but also have low BP, dizziness and cognitive problems - so I thought a beta blocker might worsen things. I'd be curious to know if it helps or worsens cognitive problems. Hope it helps! Thanks.

[ACB]

Naomi, here's what's going on so far with propranolol. It has lowered my HR by approx 20 BPM. Haven't checked BP, so IDK what's going on there. The first couple days on it, I was quite dizzy at times, which was probably due to low BP. However, the dizziness has dissipated. I typically have normal BP these days, so it looks like the lowering of BP isn't going to be an issue in my case for now.

Overall, my cognitive problems have improved vastly. I have been able to have real, meaningful conversations with my husband and talk to my 3-yr-old without word finding issues.

Right now, I'm working on finding what will work best to manage my symptoms. I haven't found it yet. Yesterday, I took 10mg at 8a and then again at 2p. I was planning to take another around 8p, but was still feeling quite good, so I decided to omit it. This morning, I had a hard time getting out of bed and had/have a super stiff neck and shoulder area (one doc indicated this sx may be due to norepi release during certain sleep cycles).

I also am not feeling too awesome this afternoon, either. I took 10mg at 8a then again around 12p, because I was feeling pretty fatigued. Today, I'm more fatigued that I've been since starting propranolol last Sat, still have neck/shoulder tightness, and am working on a headache. Sooo, IDK whether this increase in sx is due to not taking that pill last night or not. I know it is typical to have a sx increase after stopping propranolol, but wonder whether skipping one dose could lead to this increase in sx. Anyone?

[issie]

Yes, it can. With that drug you have to keep it steady in your body. What happens is you will get a blood pressure spike that will go up really high - even higher than it was before you started the drug. I thought it was going to be my miracle drug and started out that way and then started the spiking bp's. I had to stop using it. See what your bp is doing.

[Beckles]

Yep. It worked pretty well for me but I had to take it every 12 hours and it had to be pretty exact. I started getting increases in symptoms if I was even half and hour late.

[HopeSprings]

ACB - it's been a few days... how's it going with the Propranolol?

[icesktr189]

I tried metroprolanol and I fainted like I have never before. I already have a low bp and it made it ten times worse. I dont think people with already low bp's should use it but I can see where it would help with hyper pots.