New info from Cleveland Clinic

[LaLa4]

Hi All,

So I just got back from the Cleveland Clinic in Ohio and I thought I'd share my experience and see if you all relate to any of the same stuff.

After much poking and proding and being hooked up to multiple machines, it turns out that I have Hyperkinetic Circulation- at least twice as fast as a normal person when supine and then when I sit up it stays about the same and my blood pressure goes up (I guess that's paradoxical because it's supposed to go down when you sit up...? I don't know, something in the sitting up response was "paradoxical").
Then I have hypersensitivity to adrenaline (which I could have told you without testing). I have a normal response, as far as heart rate and bp increase to adrenaline, but I get a complete surge of it at the absolute slightest thing, all the time. And lately that's been getting much worse. I shake like crazy and feel that 'fight or flight' feeling multiple times every day and each one lasts for a while. And important to note: After the adrenaline testing, I was sure that the adrenaline feeling is entirely different than the POTS feelings of pre-syncope, exhuastion, etc. They both stink but they are definitely not the same thing.
Then, my resting heart rate is consistently between 85-95, give or take 5. And as soon as a sit up or slightly move it skyrockets. My bp is also relatively high (at least the diastolic is high, sometimes in the 80s or 90s I think).
And now the dr. took blood and I'm waiting to hear back about that... it should measure my norepinephrine levels and some adrenaline I think, and I'm not sure what else.
And this is all in addition to the original POTS diagnosis.

The dr. thinks these are all intertwined, and I'm sure she's right. She thinks it's possible that with a small dose of Midrodine and Metotoprol (beta blocker) that it could be "cured".  As complicated as this whole thing has been and as long as it's been, I think that sounds crazy that it could be that easy.  She gave me a test dose of a half a pill of the smallest dose of Midrodine and within a half hour I started feeling much worse, very "POTSy". Also, the beta blocker she wants to use was the one that I was on for years, Toprol (brand name) which I didn't feel any effects of until I reached 200 mg and eventually it didn't work anymore (it lowered my bp and heart rate but I still always felt POTSy). And also to note, I went off Toprol about 6 months ago and I'm sleeping *much* better.

Anyway, that's my Cleveland Clinic update! Dr. Fouad was very nice and seemed very competent and I'm glad I went up there.  But I can't wait to get her report because I'm still confused on what all this means!

Do any of you have similar issues that you could shed some light on for me?

Thanks!!

[vbc2000]

Hello :)
I'm glad you got some more answers and have access to a place that knows something about all this!

The one thing that struck me was that she wanted to LOWER your midodrine dose???  What in the world did she say the reason was for lowering it instead of increasing it.  It doesn't make sense to me, but I'm a new comer to all this!
Stephanie

[Heiferly]

>She gave me a test dose of a half a pill of the smallest dose of Midrodine

Stephanie, what I assumed when I read the above quote from the post was that she was not on any midodrine whatsoever before she went to Cleveland Clinic for the testing, and that the doc just gave her a tiny dose to test what the effect would be (i.e. rather than starting her out on a large dose).  I could be misreading, but that was what I got out of it.

[Heiferly]

I see a different doc at CC, but it sounds like you went through some of the same tests that I had.  I came up with hyperkinetic circulation as well.  My BP doesn't have the same response in upright positions as yours does, but I have a somewhat elevated resting heart rate (close to 100 like yours, sometimes over 100 when seated once I've had one of my necessary AM meds), and then a greater increase in HR when standing.  I didn't do the adrenaline portion of the test up at CC because I'd already had that on a former tilt at my local hospital (and was VERY relieved not to have to repeat it ... no fun!!) but I'm guessing it's done much the same way there.  Blech.  I agree, it was different in character from the stuff my body does on its own as part of dysauto episodes, but equally unpleasant.

Did they say anything about whether your blood is pooling and if so, how much?  That might be part of it that you don't find out about until they've had longer to interpret the results.  Did you have a QSART done as well (the one with the little sucker cup thingers on your leg ... pardon my horrible description)?  What about Valsalva (blowing into the little tube that has resistance kind of ... again, that's probably not the best description, my brain is a little foggy at the moment)?

[LaLa4]

Don't worry I know exactly which tests you are talking about!  My blood does not pool, the valsalva was normal (which I guess means that a certain portion of my autonomic nervous system is normal... but part may not be, or maybe something is wrong with the sympathetic nervous system... I have no idea), and I had a QSART years ago and I think it was normal. But I don't remember any suction cup thingy at all! I don't even remember how the test was done, I just remember seeing it in my records somewhere.
Oh and for the Midrodine, I had never been on Midrodine at all. The dr. was giving it to me for the first time to see how I reacted to it.

[Heiferly]

I forgot to say in my response earlier, if they told you up at CC that they think your dysautonomia is "curable" (i.e. that your symptoms can be brought to within normal limits, which is usually what is defined as a patient recovering in the medical literature I read on dysauto) with the right medication/treatment, then I think you should take that as a very hopeful sign.  I know for a fact that they won't "blow sunshine up your you-know-where" at Cleveland Clinic, because they really did level with me about my prognosis.  I know someone else who saw both my doc and the doc you saw up there who also got some pretty frank discussion about her prognosis.  So if they think at this point that there's hope that they can get your symptoms under control, I'll be here hoping right along with you and your treatment team!!!  You may still have to go through some trial and error to find the right treatment for you, but maybe they can tell from your testing that there's good potential there for your case to be more treatable than others might be.  

It IS a very good sign that your QSART and Valsalva were both normal ... from what I understand, it seems that your test results are showing that your case has a more heavily cardiovascular component and less of a neurological/neuropathic component.  It makes sense that this might cause more optimism because many of the medications are optimal for treating the vascular and cardiac aspects of dysautonomia.

[vbc2000]

Yes, I misunderstood about the Midodrine...thanks for clearing that up everyone!
Stephanie

[LaLa4]

Wow, I'm really glad to hear all of that (not that you or anyone else was delivered a not so great prognosis obviously...)!  But it's good to know that I'm getting a real opinion.  I hope you are right and I will definitely keep hoping and working towards a "cure" or at least feeling a lot better.

I think my skepticism comes from being soooooo used to feeling awful and getting my hopes up with each new doctor, and then being let down.  And I can't even fathom being able to do something like jogging or playing sports again, how incredible would that be!  I guess I've just learned that to preserve my sanity I have to go in to everything with a bit of realism now... but I need to be "optimistically realistic" :)

[Heiferly]

There was another woman with dysautonomia (POTS, I think?) who was in cardiac rehab at my hospital the same time that I was going there, but we were in different classes so I never actually met her.  I heard about her though ... apparently she made so much progress that by the time she "graduated" she was truckin' it on the treadmill!!  I never made it past fainting myself off the recumbent bike, LOL!  In short, YES, there definitely are people who get back to pretty darned high levels of activity with the right treatment!

So, you might still have a long and arduous road ahead of you ... who knows, they might be torturing you on a treadmill in cardiac rehab, hahaha ... but I have no reason to believe that you won't see the light at the end of this tunnel at some point.  :-D  I think "optimistically realistic" sounds excellent.  You know you've got your own private cheering section here on the dysauto forum anytime you forget how the "optimism" part goes ...

HUGS,
heiferly.

[LaLa4]

Thanks for the words of encouragement, it means a lot coming from people that are going through similar things and understand :)
I'll keep you all posted as I go.

[Dingy63]

I just saw dr. Fayoud at Cleveland clinic with initial diagnosis of hyperkinetic circulation as well. I don't understand exactly what it is either. She told me I had subtle abnormalities in my ans but don't have pots. However the treatment is the same. She wanted to put me on beta blockers but since I currently take allergy shots I can't take the beta blockers. I'm considering going off the shots to be able to take the beta blockers. I too am anxiously awaiting the "final diagnosis" and more explanation of hyper kinetic circulation. Does anyone know if this is a subset of pots?  Thanks!

[sconesail]

Hi All,

I have an appointment at the Cleveland Clinic in mid-november. I have a diagnosis of Neurocardiogenic syncope  as well as chronic intractable migraine/new daily persistent headache..  Your post was very helpful and extremely encouraging as this is one of the few places where I have heard more positve experiences than negative ones. Thank you.

I am scheduled to see Dr. Jeager in the Syncope Clinic as well as two neurologists- one who deals with balance and one who deals with headaches. (Since we are going to be there, I think it would be good too cover all the bases.)

After a really bad flu virus in 2007, I started fainting. At first it was only once or twice a week- now it occurs anywhere from 5-15 times daily. I am never out for long- only a few seconds to a minute and bounce back quickly. I have also read that these might be drop attacks. Anyway, the whole fainting this is really scary and annoying. I hope I can get some help soon.

sconesail

[Heiferly]

Dingy63 and sconesail,

This thread is approximately one year old.  I think it would be helpful if you each started your own thread (click on the "Post a Question" button near the top of the page to do so) to discuss your experiences at the Cleveland Clinic.  Diagnostics are a popular topic and I believe we could get some good new discussions going on each of your individual situations!

Cheers,
Heiferly.  

[SarcoidMTHFR]

I'm finding a lot of information linking Autonomic Dysfunction to the MTHFR methylation errors.  Has anyone been told to avoid the synthetic vitamins...folic acid and cyano-cobalamin, in favor of the bio-available forms of methyl-folate and methyl-cobalamin to help correct their AD?

[AnitaXS]

Great point! I will research this. I appreciate the suggestion.

[wannathrive_21]

I am so thankful  to have found you. I couldn't believe that somebody else was going through something similar to what I am going through.  Actually I have never met anyone who was!  

I am a 41 year old mom of four and a foster son.  I was diagnosed with sarcoidosis of the lungs about 10 years ago and soon after began experiencing numerous cardiac symptoms. Doctors don't think that the symptoms are related.  I  experience pounding and pressure in my upper belly, chest, neck, and up into my ears. It is similar to feeling like someone turns up the pressure of my blood vessels like turning up a hose or something and you feel every heart beat so strong and powerful. This happens with any slight exertion (sitting up, standing, trying to walk up a slight incline etc.) My blood pressure and heart rate rise drastically. Once it was documented in the hospital that my blood pressure went from a normal 114/70 to 167/100 and heart rate went from 70 to 160s just from standing up slowly)  All the alarms were going off since my heart rate went so high.  My husband, for a while, had to carry me up the stairs because of the pounding and pressure.  I would have to do a little bit of exertion and then stop to let the pounding up my throat, neck, head etc. die down some and them take some more steps.  or whenever I stood/stand up have to wait for the rush of pounding pressure to lessen and then start to walk.  I am also extremely sensitive to adrenaline.  Even the smallest things can make me feel like something horrible has happened.  My heart takes off and I feel horrible.  Even someone coming to my front door can make me feel like I'm getting up to talk in front of 1,ooo people.

I am trying to keep everything calm so it doesn't happen , but that's unrealistic.  I have been on metoprolol for about three years now to help extra beats and also to control the surge of my blood pressure. and heart rate.  The docs cant figure out why its happening. No one can relate .  I'm told that when you stand up your blood pressure usually goes down.  The meds have helped a little so that I can walk around now but not much more then that.  Thing are worse around my period and that's the only pattern I have figured out.  The extra beats make me feel like I'm a slave to them . I feel like they control what I do and I don't do.  I don't want to leave the house so I wont experience them when I'm away from where I feel the most safe and comfortable(home)  My life has changed so much.  I use to play volleyball and be active and miss it so much.   Even when I'm having a better day and Id like to try and do some activity I'm so petrified that I'm going to do too much and something is going to happen.  I'm so tired of feeling this way.  I feel like I don't have a second that I'm not thinking about my heart and is it going to stop, or should I try to walk up the stairs cause I know that it makes me feel worse and leads to extra beats, pounding high blood pressure etc.  I tend to notice that lifting, bending, sitting up from laying down tend to bring on extra beats, but sometimes its just after I sit or lay down.  It makes it so hard to just relax cause I'm always wondering when the next one will come and how bad will it be and how bad will it make me feel.  I tend to yawn and burp more when I having more pvc's/pac's  
I would love any advice.  Dr. at Hopkins are stumped.  I have worn heart monitors, had cardiac echo, MRI of the heart, etc and no one can figure it out.