To wean or not to wean for autonomic testing

[ablanken]

My daughter is scheduled for autonomic testing at the Cleveland Clinic. We will be coming from Virginia..I am wondering what benefit these tests have (esp for hypovolemia and TTT) if she remains on her Florinef and propranolol? How will those tests show what her body is truly doing? It seems like a long way to go to not get the true picture...

[gjensen]

I like Dr Spector at Duke.

[ablanken]

My daughter sweats a lot under her arms and is miserable. She can't wear long sleeves even in very cold weather and her short sleeves are soaked. Her dermatologist is suggesting botox, but I have read several disturbing comments about this. Are you familiar with this treatment and possible worsening of POTS symptoms?

[ablanken]

Hey!
Hope you hanging in there! My daughter made it through her final year of college. She has been very fortunate. Her medications have been keeping her functional with some good months and some so-so ones. By no means is she able to function at her pre-POTS level, but she is able to function. She is teaching health and  physical education to emotionally challenged and autistic children. Most days she is exhausted by the time she gets home. She says she feels like an old person going to bed so early! But she is so fortunate at this point to be able to do what she does. Recently, some of the old symptoms are starting to come back. Digestive issues, lack of appetite, dizziness, fatigue....I worry that she is going to relapse into that black hole again. Unfortunately, we are back where we started with physicians. Dr. Fouad-Tarazi retired without any warning. I'm not sure where to turn at this point. She needs to see someone. I want her to see someone who will sit down with her and talk. Someone with compassion who will work with her and involve her in decision making. Someone who will hear her when she tries to explain how she feels. I don't know if Vanderbilt is a good fit or not, but we have very limited choices...well, we have no one at the moment who will see her. I wonder if there is anyone at Duke who has taken up this fight?

[Arasevera]

Hi - I was recently dx'd w/ my autonomic system dysfunction here in Boston. most definitely get off all meds that are not essential to sustaining life - otherwise, none f the tests will be accurate. I had to be tested 2x b/c the first time, they didn't tell me to wean off everything, just my SSNRI (which in itself causes OA)- so I went back and got the second set of  tests a month later. They are not in any way painful or stress-provoking. You just lie down for a bit, then they stand you up for a bit, and do some breathing tests as well. Took about 2.5 hrs. Piece of cake!!!
Just hope the Mayo teats you better than the Boston experts treat me!

[Heiferly]

Cleveland Clinic is rather anti-IV fluids as maintenance therapy (due to the lack of clinical trial evidence so far on this, not because of any known harm). There are, however, plenty of patients getting routine IV fluids rxed through other doctors/hospitals. Ironically, one thing that might have helped with that would have been the radionuclide hemodynamic and blood volume study; results from that can bolster the case to get insurance to approve the procedure to have a PICC line or port put in for the fluids and to pay for the home health supplies or infusion center for the ongoing fluid support.

Talk to your local cardiologist and PCP about fluids, especially if she is on a cycle of waiting until she gets badly hypovolemic/dehydrated and then ending up wasting time and money in the emergency room getting "tanked up." This is a vicious cycle many POTS patients fall into, and can be a sign that routine IV fluids might be helpful. I've been working on this myself for years now, though, and am only now making progress; most patients have a difficult time getting doctors and insurance behind them for routine IV fluids. I want to be completely straightforward about that so you know what to expect. Let me know what other questions you have if it is something you want to aggressively pursue.

So sorry about her struggles at school. She sounds like a real trooper!!

[ablanken]

Thanks for your comments. TTT results were the same. The hemovolemic study was unable to be completely done due to becoming symptomatic and legs raised..so the whole picture could not be obtained. It didnt help that for some reason no blood pressures were recorded during a portion of the test. No one could figure out why.

Unfortunately, we were unable to obtain the results for months. Our local doctor never received the letter that was to be mailed after 7 days. We never received our letter that was to be mailed after 2 weeks. Unable to obtain any info by phone. Finally, in June, we requested that our local doctor request copies of the medical records from CC. That was the only way that we obtained the information. We had repeatedly called asking about scheduling our followup appt, but were told none was required. The copy of the medical records clearly showed that we were supposed to see the doctor in 3 months. Of course, when we asked why we were never notified and why no one could give us that information in our many calls, there was no response other than to say we could schedule an appt for December. Wow. That was not what we expected from a medical facility such as CC. Also, they misplaced all med records faxed twice to the office. Unable to find any of the records that we hand delivered to them...including disks with the echo on them. Not sure what to think about all of that.
Anyway, our followup visit from April was in December. Haven't heard anything from them after a month. Decisions were to be made about medication changes. Her BP baseline is in the 90s/60s. Pulse baseline at rest is usually 50s and 60s. Before beta blockers, her pulse could rise to the 170s. Now, 80s and 90s, but higher during the times when she starts feeling really fatigued again. The doc wants to take her off the beta blockers because her BP is so low...we are a little worried about the tachycardia issue. Her BP was in that range even before she became ill. Its a tough call. The doctor mentioned starting a different drug..levbid or something like that...I really havent heard that much about that one. Right now she is on Florinef, propranolol, vitamin D, low dose thyroid med (even though TSH and T3 T4 are WNL), salt tabs...
She has been able to remain in school. It has been difficult. By Friday, she sometimes can't get out of bed. Unfortunately, although her profs were notified by the assistant dean of her situation, one severely punished her on attendance grades (Friday am class) even though she did all of her work and did it well.
Currently, she has one more semester. This week has been a rough one. I'm beginning to see cycles of this exhaustion. I can't find a trigger for them yet. I wonder if a bag of IV fluids would make a difference when these episodes occur...
Anyway, hope your holidays went well and hope this new year offers more solutions than problems.

[Heiferly]

I think you can go either way at this point.  You've had a baseline established already because she's had previous TTT (the other autonomic tests are only susceptible to interference by certain drugs and the lab should tell you whether to stop any of her drugs if that's the case), and provided you bring the original tracings from prior TTT, CC can reinterpret that one to get her baseline prior to meds.  Having this one done on meds would give the perspective of how much (or little) the medication is helping, which might be quite helpful, and as I said the other testing will still put the extent of autonomic dysfunction into further perspective.  I can't say whether it's arguable or not that the TTT is "susceptible" to interference by the mainstay dysautonomia meds such as Midodrine, beta blockers, and Florinef, as it's quite common for patients to be told to stay on them for the test (I've had tilts both with and without these meds 'on board'); however, it *seems* to me that it must be accepted within the medical community that their effects are seen on TTT because there are clinical trials of some of these selfsame drugs on TTT (whereas they are not trialed in other forms of autonomic testing as they are meant to treat the *symptoms* not the underlying autonomic dysfunction) and because from the few patient reports I've been privy to, it is taken into account (at least somewhat) whether the patient was on these medications or not at the time of the TTT.

Oh, I should add one caveat to what I just said.  Midodrine and Florinef (unsure about beta blockers, but I'm thinking less likely??) can also impact the radionuclide hemodynamic and blood volume testing that is done at CC.  However, it was my experience that this was not problematic whatsoever.  When Dr. Jaeger reported my results from this study to my cardiologist over the phone (I was in the room and could hear pretty well ... ahhh, smartphones and their brilliant lack of privacy, right?) he did point out with what seemed to be surprise in his own voice (of course with many patients he was looking up my chart himself at that moment and "rediscovering" my results) that my % of pooling was rather high DESPITE fludrocortisone and the max dosage of midodrine being on board at the time of the test.  So, looked at that way, it was to my benefit to stay on my meds because had I been off them it might have been possible to say "yeah, this is bad but it's probably much better when you're taking your meds."

It's a double-edged sword, and as patients I'm afraid we're always going to have a great deal of anxiety over these tests, we're not always going to be happy with the results (even we have good days and unfortunately sometimes they pop up on testing days!), and we're not always going to be happy with how they are interpreted.  What solace I can lend you is this:  my experience has been that over time, one of two things will occur

1.  You will get better, and it won't matter a whit what happened with test results because your condition will be improved/resolved to a point where you can go on with your life and forget about all this.

2.  You will have a more prolonged illness and over time will accumulate enough doctors' opinions and test results that the ones that don't demonstrate the severity of your illness the way you think they ought to will be counter-balanced by others that do and by-and-by you (and your condition) will start to be taken more and more seriously by various medical practitioners.  


If someone had told me this 5.5 years ago, I don't know that it would have helped me to find peace or relax a bit.  I wonder if there aren't just some things that you have to get through yourself to lessen the stress of.  I hope, at least, that some of the information you get here is helpful.  

Best to you and your daughter,
Heiferly.

[ablanken]

Thats what I was thinking. When I called the doctor's office, they said to stay on the drugs...seems like it would be hard to assess what her body is actually doing....

[CHRISTYDRAKE]

My son had his original testing done at Case Western University Hospital in Cleveland in Oct 2009.  His TTT showed he had POTS.  For that testing, he had to be off of his medications.

We had the testing redone last October at the Mayo Clinic.  They didn't take him off his medications and his tests were very mild.  I'm sure it was because he was still on his medications.  The doctor said the results showed he was in recovery???  These results I'm sure were skewed because of the medication.

If I were you, I would have the testing done while OFF medications.  The doctors will take the results more seriously