Need Some Advice, Appt's Quickly Approaching :)

[DizzyGirls]

So, I have a predicament. My daughters have been selected to be a part of the Autonomic Clinic at UCSF, but come to find out, it is not going to be up and running until after the first of the year! Yikes!! Their neurologist was asking us to have two MRIs done, a CT, a trip to Urology and ENT all by October and mummbled something to himself that they will open on a Wednesday. We got all of them accomplished with the exception of the ENT doc.

My problem is this: we have an appointment scheduled on Nov 5 for Stanford to see Dr. Jaradeh at the Autonomic Clinic down there. When I made the appointment, we had no idea that there was going to be a Clinic up here near us. Also, our neuro said that the Cardiologist that will be part of the Autonomic Clinic at UCSF doesn't like tilt table tests and said something about sending us home with a device. Not sure what he meant, but if the doctor doesn't like tilt table tests and wants to send us home with something to record or log (or whatever?!) it sounds much more appealing to me. My daughters are hanging on by a thread, and to make their vertigo and other symptoms worse than they already are is very frightening to me. I've read all of the posts on this and other forums about the TTT, it's sounds like something out of a horror movie. I am seriously thinking of rescheduling our Stanford appointment, but I don't know!! HELP!!!

Here's another problem: After my oldest (19) had her MRI and CT (to clarify things), they found a cyst encased in her petrous bone. This is located right near the auditory canal and some of the symptoms of this are vertigo, TMJ pain, fullness in the ears, severe headaches, etc. She has all of these. Should I even haul her anywhere until after we see the ENT and they decide what to do about this cyst? BTW, the petrous bone is the hardest bone in the body and is also the least accessible. Go figure!

October is going by quickly and I don't have much time to figure this all out. We don't see the ENT until mid November. There is a very slight possibility that they might be able to get the girls in to see the Cardiologist (the one associated with the Clinic), before our Nov 5 appointment at Stanford, but it will take a miracle.

Any advice/help would be much appreciated! Thanks!!!

p.s. pretty sure they have Hyper-POTS, do they diagnose that differently than the regular. I thought that I had read on here that they did. Not sure how the Hyper variety would do with a TTT?

[statesof]

Hi DizzyGirls, you can always keep the first autonomic specialist appointment and then see how helpful it is, since the UCSF appointment is much further on. And showing the autonomic specialist the MRI and ct results might give her the ability to weigh in on if the cyst seems to be a part of the problem or not. I would just let the ENT know your going to the autonomic specialist and see if they have any recommendations on what to do with the MRI ct finding.

TTT's are not nearly as scary as they seem, most of the test is done lying down and then they prop you up in a standing position at the end, usually for around 15 minutes sometimes longer depending on the test, and how your symptoms react. The device that the doctor would send you home could be a holster monitor, where it records your hr changes throughout each day. For me my TTT's were abnormal but my holster was normal, though it depended on who read over the findings of it.

[Katybug]

I agree with what statesof had to say. More than one opinion is not a bad thing, especially when it comes to such complicated issues. It has taken a diverse set of doctors all using their knowledge to start to untangle my issues. And, they continue to have to all contribute to my care with knowledge and creativity as I have more than one rare diagnosis.

And, as statesof said, a Holter monitor or an event monitor records HR information, but not bp. A ttt records both. As different forms of dysautonomia can cause either HR or BP issues, it's important to investigate both. The ttt is the gold standard for that.

I have had 2 ttt. I'm probably looking at a third as things seem to have changed for me. I'm not going to lie, the ttt isn't pleasant. But, I have been just as sick at home as I was during my ttt. Both times I had my ttt, I also had bad migraines and was asked if I wanted to reschedule. I said no because the way I think of it is that I want my docs to see me at my worst and be able to monitor me at those times so there is a good chance they can actually get good information about what is happening to me. Yes, it's unpleasant, but no more unpleasant than when I'm just as sick laying at home and the docs can't be there to figure it out.

[DizzyGirls]

Hi statesof and katybug! Thank you for your replies. I am thinking that you all are probably right, and that we should seek help no matter where it is. It might be to our disadvantage to keep things all in one place. My only fear, though, is the TTT making their vertigo so bad that they can't get it calmed down. Then what will we do? Also, my girls can't lay down. They just start to spin even worse. I guess that is my biggest fear, is that they have to lay down for this.

Oh, one question....How fast do they raise you up from laying down? Does anyone know if it is a manual or automatic bed? Those automatic beds make them really spin. They've been through so much and the important stuff hasn't even started yet. Thanks for your help!

[ks42]

It's true that a TTT really is the gold standard for diagnosis. I believe that Stanford might also perform other autonomic testing (don't quote me on this though) such as the valsalva, QSART, and breathing tests. These are really valuable in that they give information on the state of the autonomic nervous system, outside of diagnosing POTS, and can give clues as to what underlying issues there might be, or what medications might work best. I would say this will probably give you a much more thorough look at what's going on.

HyperPOTS still requires TTT with full autonomic testing, just like regular POTS. The only difference is that in addition to the tilt, you need a supine/standing catecholamine test (often done separately) to determine whether their catecholamines rise on standing, as by definition, HyperPOTS patients have elevated norepinephrine levels with upright posture.

The TTT typically requires you lay flat for at least 30 minutes before doing the tilt. If they are doing other autonomic testing, they'll do that during the 30 minutes that they are lying flat. As far as being tilted, my first cardio tilted me up tiny bits at a time, although Mayo tilted me up pretty fast. By Mayo standards, you only need to remain upright for 10 minutes total. Cardiologists typically like to do up to 45 minutes, so it depends on whose standards they are using. I believe Stanford uses Mayo standards, though. The tilt was actually very easy for me. I failed it, of course, but 10 minutes went by quickly. What really got me was some of the autonomic testing, just because I had some very strange cardiac stuff going on at the time, and it exacerbated that.

Couple of thoughts: I was actually able to schedule a "consult only" appointment at Stanford last year, even though I hadn't had autonomic testing - I declined the testing because my cardiologist thought I was too unstable to go through it. I actually wasn't stable enough for full tilt and autonomic testing until a few months after my diagnosis. Would it be possible for you to decline the testing, go in and have the consult, and see what Dr. Jaradeh recommends based on their issues with vertigo and with the petrous cyst? Maybe he'll recommend that you deal with the cyst, then come back for testing, and maybe he'd be able to figure out how to modify the testing due to vertigo issues?

Or, could you ask to talk to someone in the testing department, explain all of their issues with vertigo and the cyst, etc, and see if there is any way to modify the testing for them? I was able to talk to either a neurologist or someone in the testing department at two autonomic clinics I contacted, but I don't know about Stanford.

[Katybug]

I think another thing to keep in mind is that the ttt is meant to elicit a reaction from your body if the autonomic nervous system is not working correctly. And, unfortunately, being able to record what is happening during this response is how the doctors can start to understand what is happening physiologically to the patient. They are kind of flying blind without this information and any treatments are strictly guesses.

[DizzyGirls]

ks42 and Katybug,

Thank you so much for your advice! I will keep all of it in mind. I have come to the realizing fact that in order to help them, they may have to lie flat for a bit, maybe they will be able to shorten it some so that they can get their readings, but not send them in to full tilt vertigo. My worry is that they take everything there is available to control it, and when it gets really bad, how will they stop it? I guess I'm just sounding like a worried mom right now. I just know how difficult it is to control. We got an ok already for them to take their meds the morning of the appointment and testing because I told them that there most likely wouldn't be an appointment if they didn't. The nurse then responded with a comment "they aren't able to do much then". I said "no"! Why do you think we are coming all this way? (I didn't tell her that part, but I would have like to have). Something tells me, though, that my youngest will probably pass out from stress before they even explain what they are going to do. May answer some questions, who knows!

Thank you!

[PupLoverKV]

Before they did my TTT I was having problems with vertigo as well as other symptoms because of what we now know is POTS. I had heard horrible things about the TTT but knew I needed to do it, thinking "I need to do everything I can to figure out what is going on".

I'm not going to lie, the TTT was brutal for me. It really messed me up for the rest of the day - I was unable to move from a chair fort I made for myself in the Mayo Clinic waiting room for almost 8 hours (my gap between the test and my neuro appointment). It was so bad they sent the gal who performed it out to check on me. I also don't regret the test one bit. Being uncomfortable for 8 hours was 100% worth knowing what is going on and having a proper diagnosis - something I was lacking before.

Just please make sure you are with your daughters the day of the test. It sounds like you plan to be... but I really wish I wouldn't have gone alone. My mom wanted to go and I told her "no", unfortunately she listened. It would have been great to have her there in hindsight.