News from Vanderbilt

[Rita]

Hey guys I got back from vandy and things went pretty well. They diagnosed me with pots and oi, I was diagnosed with vasovagal syncope and oi. I was under the care of Dr. Satish Raj he was really friendly, we even discussed kids cartoons together. He has a 15 month old and I have a 18 month old. They started by doing med trials with me and I did really good with at least 4 different ones. After the med trials they did blood volume testing, mri ( more advanced than normal it even monitors your brain function and you have to go through mental testing during the test ) , and some pain testing. Things were ovre all really great and the nurses were spectacular. Anyways here are the answers to your questions and if any one has any more feel free to ask.

1.) What causes cravings for salt and water: Dr Raj feels that we crave this due to the lack of our bodies ability to obtain it. He says we should consume plenty of water during our meal along with salt consumption. He says that one without the other and they will not work. For example: if you just eat salt there will be no water to obtain and if you just drink water it will go straight through you.

2.) My legs cramp at night when I lay down to rest at night, but it is not my potassium levels. What can cause this and what can I take to help with the pain: He is not really sure what actually causes this, but says that he tells his cardio patients to drink tonic water for there leg cramps and this helps them.

3.) Other than beta blockers is there anything that can help with low blood volume and heart pounding after eating: He says that beta blockers do not help with blood volume, although it does help with heart pounding. For the low blood volume florinef or fludrocortisone is neccessary. Fluids can also help with low blood volume.

4.) The autonomic system sometimes effects libido why: He does not have any proof that this is the cause he says that it may be related to our fatique and some meds. There was nothing he could give to help it other than try bottom positions more.

5.) Can or does the lack of oxygen during syncope events cause slowed brain function and or damage to the brain over time: In syncope no, but in pots he says that it does affect our concentration and memory.

6.) Is there any at home 24 hour blood pressure monitoring at home: Doctors can call for a 24 hour ambulatory monitor, although unless neccessary Dr Raj disgourages this because he says that sometimes you find out more complications that never really bothered you before and could make you more aware and therfore it would bother you more. Kinda like the saying what you don't know won't hurt you.

7.) Is there any need to see a nerologist: When dealing with pots and syncope no, this is like your power going out and you call a computer technician to fix your computer, of course he will not be able to do anything because there is nothing wrong with your computer. Sometimes you may need to see one if you have migraines and or other problems though. You should see a cardiologist for pots though.

Well there is a brief little over view if you have any questions let me know. O h yeah bye the way my new meds to try ar florinef 1 time daily, paxil 1 time daily, and propranolol 3 times daily. If this does not help they are going to add another med or so.

Yours truly,

Rita s

[lalalisa]

Rita,

Thanks for your summary of your visit to Vanderbilt. I am considering going - but I'm pretty nervous about being admitted to the hospital for such a length of time.

A few questions:

Did you have a tilt table test done? How long were you in the hospital?

I was on Paxil CR for 2 years...It helped my anxiety and i think it also helped with my nervous system. I went off of it this summer and i've been feeling much worse. I'm going back on it this week to see if it was in fact helping with my nervous system. Please keep us posted as to how / if it works for you.

Glad you had a good experience. Hope the meds, etc. help you!

Lisa

[corina]

Thanks a lot Rita for answering questions!

Corina

[Radha]

thanks so much rita for taking the time to ask questions about others when you could have just focused on yourself, that was very generous of you, and i personally appreciate it alot, the question about beta blockers and low blood volume was what i asked, and i was really touched that you remembered and took the time to ask, thanks again, at least its a relief to know that i am doing all possible, and there isnt something further to be done right now,

radha

[cnm1]

Rita

Thanks for leting us know your experience. What meds are you on now?

Louise

[Guest Julia59]

Rita, thank you for sharing your experience at Vanderbilt. It sounds like you had a positive experience, and that they were able to help you.

It was really nice of you to give some of the details of your visit to perhaps help some others who may also have thier own questions---------- .

Take Care,

Julie :0)

[Sunfish]

hi rita -

i am SO sorry that i never replied to your post initially after your return. i was having a rough time when you first posted & then had meant to go back to it so many times but obviously you can't read my mind here in ohio! i just realized that i never had & wanted to let you know that i was thinking about you while you were at vandy & since. i'm glad you had a good stay. thanks too for posting all the questions/answers that you did....

bonnie had told me about the MRI protocol but it wasn't approved yet when i was there....i think everything else you mentioned i also did.

i'm sure your family missed you tons & was plenty glad to get you back

how have you been doing since you've been home?? have your new meds been helpful at all? or at least the cooler weather?

hope things are looking up for you,

melissa

p.s. did you end up having a replacement roomie while you were there?

[Dizzy Dame]

Rita,

I hope your meds are still working. I was wondering though, how did you arrange to go to vanderbilt. It sounds like something I'd like to do, any advice?

- Lauren

[Sunfish]

hi lauren -

i don't mean to jump in on your question to rita, but am doing so all the same:-)

here's the link for vanderbilt adc's main page:

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc

then click on "patient information" & then "becoming a patient..." on the left-hand side of the page. there is info both on being a research patient (inpatient) as well as seeing one of their docs as an outpatient. there is lots of other good general info as well (under both "autonomic disorders" & "learning resources").

i was a research patient at vandy for 2 weeks in may & the webpage was actually updated while i was there

i wrote a (very lengthy!) saga of my stay at vandy as well as what led up to it for the forum after i returned so if you're interested (and have some time to kill!) it's at:

http://dinet.ipbhost.com/index.php?showtop...bilt+chronicles

i'm sure rita will write you back too & several others have been as well.

hope this helps. let me know if you have any other questions....

melissa

[Guest GayleP]

7.) Is there any need to see a nerologist: When dealing with pots and syncope no, this is like your power going out and you call a computer technician to fix your computer, of course he will not be able to do anything because there is nothing wrong with your computer. Sometimes you may need to see one if you have migraines and or other problems though. You should see a cardiologist for pots

<{POST_SNAPBACK}>

I wish there was such a thing as a neurocardiologist. With dysautonomia related heart issues it's hard to know if it's the brain messing up the heart or if the heart itself has problems. In most cases it's the brain controlling the heart. Yet most neurologists have no clue about many disorders of the ANS.

In a perfect world there would be a combined specialty of neurology and cardiology to treat dysautonomia.

BTW, I'm glad you got some answers at Vanderbilt.

[Sunfish]

i agree that a neurocardiologist sounds like a good idea:-)

i didn't comment on it before, but dr. raj's comment regarding seeing a cardio actually surprised me as he isn't a cardio himself. most of the autonomic docs at vandy aren't but are pharmacologists & neurologists. he may have been speaking in regard to the best place to start though in terms of finding a doc locally?

generally speaking i think what matters more isn't the doc's specialty but how familiar/comfortable they are with POTS/NCS/dysautonomia. and then of course the type (of dysautonomic) can matter. i had the head of EP/cardiology at hopkins last year tell me he wasn't comfortable treating me anymore b/c i had too much involvement/progression with other body systems, but dr. grubb is a cardio/EP & is currently my primary ANS doc. in baltimore my primary ANS doc was a neuro. and at vandy my attending was a pharm. i think it varies a lot by the actual doc & their interests/knowledge. just my two cents:-)

melissa

[Guest Finrussak]

I was thinking the exact things as Melissa and Gayle...btw there ARE a few neurocardiologists but not only are hard to find, they usually stay in the labs...no clinical or patients other than the studies.

And the problem with even knowledgeable cardiologists is that theyre not at all familiar with neurochemicals or the meds that adjust them; and the neuros are just as unfamiliar with cardiac drugs. The best case for now is to find a really good ( meaning no pretentions, willing to be a team player) cardiologist to rule out cardiac probs that can come with or be worsened by the dysautonomias, PLUS a good neurologist and IF they work together on meds etc, PERFECT!!!

Ive had over time half of this combo...never both...still working on it...either the cardio is willing and the neuro clueless or vice versa

As for Vanderbilt, while they "like" their patients to be within a protocol for a study, they sometimes ARE persuaded to see a patient without the experimental stuff...for dx and maybe tx. Its worth emailing and also having your Drs. email or phone them. I didnt fit many of the protocols but had gotten so bad my cardio phoned them and they were going to see me BUT wouldnt take responsibility for transport and at that time without medical transport it wouldve been too risky. By the time I was a bit stronger Dr Grubb had an opening and my choice of an unknown Dr at Vandy with a 14 hr drive lying down and retching all the way OR a 10 hr drive to Dr Grubb, with my older son the EMT along...well I chose the latter and dont regret it.

For those disappointed at not getting into Mayo ( notoriuosly picky) or Vandy or anywhere else...just think of it as "when its the right time...meant to be...it will happen!!" a favorite expression of my grandparents'...Of course the Yiddish doesnt translate perfectly but you get the idea

I have fretted over many a failed appt due to illness, etc and it often turns out for the better anyway!!! I end up meeting more helpful professionals or people I wouldnt have had the chance to meet; have experiences that in the end prove "better".

[futurehope]

Gaylep,

At NIH (National Institutes of Health) in Bethesda, MD, there is a department of neurocardiology and Dr. Goldstein's title is he's a neurocardiologist. I saw him there when he was accepting patients for his POTS study. Unfortunately, he has discontinued accepting patients for a week-long stay for numerous tests. Also, he did not treat, he just gave you more info on your specific problem.

Where are his clones?

[Sunfish]

this is nothing for anyone to hold their breath for or count on, but if you are interested in the research aspect of things NIH MAY still be accepting patients. i sent my info to them in february & got "accepted" then but not scheduled b/c they were so behind. i actually was just contacted again last week as they're starting to schedule some folks again, but only locals to start (which i was when i applied but not now; i was less than an hour away). so i'm going to be called again when they start scheduling the long-distance folks but likely won't go as it would have to be 2 trips. after speaking with dr. goldstein's research nurse, ALL of the autonomic protocols are now requiring an outpatient eval first with the actual study scheduled later. this wasn't always the case. so...the reality of my being able to go off my meds twice, make the trip, etc....probably not something i'll choose to do as it would likely mean not taking even the few classes i'm managing now for some period of time. but...i thought i'd put the info out there. of course they're now just starting to schedule folks from almost a year ago so may not be taking any at all now, but there are still new patients being scheduled to a degree...

melissa

[vemee]

How long was it from the time you sent in your application to the time you heard from Vanderbilt?

[briarrose]

Thank you for your question & answer segment it was nicely put and very informing. I'm glad that you were glad to get into Vanderbilt and find help in meds and answers.

I didn't necessarily agree with #3 though. Hypovolemia can't always be cured by just drinking fluids, increasing salt & taking florinef. Florinef just helps to retain fluids but not always in severe cases. There are times when IV fluids are necessary, this is one of the main things I don't like about Vanderbilts way of thinking. I attended one of Dr. Robertson's Grand Rounds and he actually discouraged all the doctor's who thought about giving IV fluids and told them that they needed to offer their patients a glass of water instead.

I know Vanderbilt has done a lot of research in the way of POTS and is highly accepted by many and I personally liked Dr. Robertson he seemed like a very nice man. But I think that some of these research facilities like Mayo, Vanderbilt & MAYBE even NIH don't have a clue what happens long term to POTS patients because I've never heard of them being studied over long periods of time in their change of symptoms. AND I think that sometimes these facilities are pushing a medication and skewing the outcome by too selective of a "hand-picking." (Picking only patients that will succeed with their study and then declaring it good for all of us!)

Thx again for sharing your info to everyone

Edited October 19, 2005 by Sunfish

[Sunfish]

vemee -

i heard from vanderbilt about a month after sending in my application (although i appreciated that they confirmed their receipt of it by email as soon as they rec'd it)& then actually went about 2 months later.

briarrose-

i agree with you in regard to hypovolemia not always being fixed by fluid intake. i actually am not severely hypovolemic but still always improve with IVs. and while i get worse if i'm particularly dehydrated, i don't necessarily improve just by drinking fluids & eating salt. and my "medication trial" with drinking water at vandy confirmed this. so i was surprised to hear what you heard from dr. r. i didn't have him specifically at vandy but when i was there they were super supportive of my needing IVs. i could have them during the testing/trials of course but they "pumped me up" prior to discharge & included my need for IVs in my discharge notes/planning summary. so there may be varied thoughts/opinions with passage of time or with different nurses/docs or who knows why...

melissa

[vemee]

vemee -

i heard from vanderbilt about a month after sending in my application (although i appreciated that they confirmed their receipt of it by email as soon as they rec'd it)& then actually went about 2 months later.

briarrose-

i agree with you in regard to hypovolemia not always being fixed by fluid intake.  i actually am not severely hypovolemic but still always improve with IVs.  and while i get worse if i'm particularly dehydrated, i don't necessarily improve just by drinking fluids & eating salt.  and my "medication trial" with drinking water at vandy confirmed this.  so i was surprised to hear what you heard from dr. r.  i didn't have him specifically at vandy but when i was there they were super supportive of my needing IVs.  i could have them during the testing/trials of course but they "pumped me up" prior to discharge & included my need for IVs in my discharge notes/planning summary.  so there may be varied thoughts/opinions with passage of time or with different nurses/docs or who knows why...

melissa

<{POST_SNAPBACK}>

[vemee]

Thanks for the info.

[ramakentesh]

I didn't necessarily agree with #3 though. Hypovolemia can't always be cured by just drinking fluids, increasing salt & taking florinef. Florinef just helps to retain fluids but not always in severe cases. There are times when IV fluids are necessary, this is one of the main things I don't like about Vanderbilts way of thinking. I attended one of Dr. Robertson's Grand Rounds and he actually discouraged all the doctor's who thought about giving IV fluids and told them that they needed to offer their patients a glass of water instead.

times have changed then because most of the Docs at Vanderbilt are now suggesting that their patients get IV fluids, some even approving PICC lines so that patients can receive IV fluids as often as needed.

And yes they are looking right now at why some patients dont retain fluid and salt from ingestion but do so much more from IV fluids at least acutely.

[vemee]

I just got a letter from Vanderbilt asking if I wanted to come back for a study on hypovolemia. I would like to go but this year doesn't look promising with too many things going on.