redoctober

I do...idiopathic at this point...and 2 neck explorations later. Endo thinks it might be secondary to hyperabsorption or renal leak...

I just called them myself...Dr. Watkins only takes 1 new patient per week, and he had a slot open 2 weeks later. Didn't need to involve my MD at all. The appointment lasted about 3 hours...Dr. Watkins spent about an hour with me himself.

Plenty of fluids seem to help me the most...trying to stay hydrated. I tend to mix powdered Gatorade w/Alka-Seltzer Gold (has K)...and drink a ton of this every day. Can't say that any specific supplement has been helpful, but I'm always open to suggestions.

I wish i could get some decent rest. I wake up every nite at 4am feeling that my heart is racing but when i take my pulse it is about 72 which is my normal rate for lying down....could this be anxiety? My BP is normal...not high and not low...is that a good sign?

Exactly how I felt...I would wake around 3-4am feeling like my heart was racing more than normal and very anxious. As soon as I'd stand up...it would shoot up to 120-130 and I'd feel really dizzy/shaky/nauseous. BP has always been pretty normal (used to be slightly hypertensive).

Regarding the appointment, he was able to get me in within 2 weeks...which was great.

Here's a link that explains my experience w/Dr. Watkins: http://forums.dinet.org/index.php?/topic/17399-my-visit-with-dr-watkins.

I also had the pleasure of consulting with Dr. Robert Hamill in VT while on vacation (listed on the DINET physician list)...who is a neurologist (wonderful experience...which I'll post on shortly). Short of going to Vandy or Mayo, I really think you need to get a consult with a Cardio & Neuro to cover all the bases.

Have you considered The Autonomic Disorders and MVP Center in Birmingham? I consulted with Dr. Watkins a couple of months back...he had a nice signed letter from Dr. Blair Grubb on his credenza. Overall, I was very pleased with the visit...although the do focus more on the cardio aspect of things.

I live near Atlanta...and have already been down that road. There is NOBODY in Atlanta who is versant in dysautonomia...not even the renowned Piedmont Cardio Groups. Fortunately, I found this out via a very helpful forum member (firewatcher) who lives near ATL as well...so I didn't bother wasting time with any of the local docs.

So, I ended up calling the MVP/Dysautonomia center in Birmingham...and was able to get an appointment with Dr. Watkins 2 weeks later. Very good visit...you can find my post from a few weeks back illustrating my experience with the visit.

By chance, who did you end up seeing...the Piedmont group, or one of the folks over @ Emory?

I just visited a month ago...appointment with Dr. Watkins. Very pleased with my visit...what would you like to know about?

I would taper your dose upward....I started on too high a dose...experienced the same problem as you (including nasty headaches)...and discovered that I should be gradually increasing the dose to allow your body to get used to it. I take .025mg right now...which seems to be okay for me.

I wouldn't think so. When I started Florinef...I did so on too high of a dose (headaches)...and it took a few days of skipping doses to feel better, due to the long half-life. So, I doubt that skipping a single day is causing much of a problem for him. Just my experience.

I suppose it depends upon the dose somewhat...Florinef has a pretty long half-life...so he'll still have some floating around even if he misses a dose. But, Florinef isn't something you can just stop out of the blue at higher doses, so I suspect that his body wasn't ready to compensate for the reduced serum levels.

I've been taking Atenolol 2x/day for high HR's in the morning and during the day...but I've been skipping my morning dose recently and my daytime HR rarely gets above 70bpm. I tried skipping the evening dose the other day...but my HR jumped from 60 to over 100 just getting out of bed.

Does anyone else have a similar experience with BB's? I should also mention that I started Lexapro at the same time...so it may be having an effect as well.

Lunchables...aren't those things loaded with sodium?

I started on 2.5mg a few weeks ago...and bumped up to 5mg last week (my original RX). I'm considering moving back down to 2.5...since I get nausea and sick to my stomach quite often. Not sure if this is due to the dysautonomia or meds.

Does 2.5mg seem to be the consensus RX that is most helpful?

If I may ask, is it still working for you, and are you still on 2.5mg or did you raise up to 5mg?

My Dr. started me on Atenolol & Lexapro 4 weeks ago...since then, my HR has been much lower most of the day (except during/after exercise), yet I still continue to get "hot flashes" from time to time, although my HR doesn't respond like it used to (can sit around 50-60 the whole time). Are these a result of adrenaline or what? Is the Atenolol supposed to stop these...or just the HR response to adrenaline, or what?

Looking for some insight...

It takes at least six weeks. However for pots I would give it atleast three months.

Have you seen continued improvement since your post a few weeks ago? Anything quantifiable, like BP or HR?

Red, are you saying that with Florinef, your heart rate has calmed down just due to the expanded volume?

It seemed like it did help with my resting HR initially...and it definitely helped with my exercise stamina/HR. But, the headaches were problematic and I felt that it worsened the blood pooling a bit (abdominal region mostly). I think I was still getting some HR spikes...like hitting going from 60-90 just getting up for lunch...which were probably causing the headaches.

I started taking Florinef about 2 months ago...initially it seemed to help, but gave me really bad headaches. I've since seen a Dysautonomia specialist, who prescribed a beta-blocker (among other things) to stabilize the heart-rate response and took me off the Florinef. I complained about some fatigue and lower BP's...so he added Florinef back into the mix. At .025mg, much better this time around...perhaps because I'm not getting the spiking I was getting before with the compensatory HR stuff.

Can you define "horrible"? Did it worsen your hypotension, cause nausea, or what?

For those taking Lexapro and finding it helpful for boosting BP...what has been your experience through the first few weeks? I started Lexapro 2 weeks ago...and my BP right now is just awful for me (100's/60's), and I have lot's of nausea. Did any of you experience this in the first few weeks...and did it resolve after it eventually "kicked-in"?

Just trying to make sense of whether Lexapro will eventually help or not...

redoctober..... what is Phenylephrine? does it do something similar to the body as the midodrine is supposed to do?

As I understand it...phenylephrine is a vasoconstrictor...works somewhat like pseudoephedrine, but perhaps more directly so. I really don't get any side-effects from it...and it seems to be helpful.

I tried Midodrine...didn't do much for me, and really didn't like the tingly side-effects. OTC Phenylephrine worked much better for me...without any weird side-effects.

Maybe I'm confused about this, but aren't carbs supposed to boost serotonin...and isn't adequate serotonin supposed to be good for motility and vasoconstriction? I've read somewhere that high protein diets can actually lower serotonin...

I asked Dr. Watkins what aerobic exercise would be appropriate, and he said walking, running, or bicycling would be fine. He didn't give any specifics...just said 150min of aerobic exercise per week.

I've been on Clonazepam before...pretty easy to come off since it has such a long half-life. Per firewatcher, I believe he prescribed it to "calm" an over-stimulated nervous system. He also mentioned that I was probably getting very poor restorative sleep...so it will help with that as well (taking .5mg at bedtime).