redoctober

So, I had an appointment with Dr. Phillip Watkins of the MVP & Autonomic Center in Birmingham, AL last week. For starters, it was an absolute RELIEF to speak with a physician who didn't look at me funny and understood exactly how all of my symptoms were related. I was very impressed with Dr. Watkins and the time that he spent with me.

They started me off with an Echo-cardiogram...pretty standard, except they also like to perform some imaging in the sitting position, presumably to capture things when the HR is really going. Next was the tilt-table...I was pretty surprised with this test, as I wasn't all that uncomfortable in the upright position, and my HR didn't really spike too much. Perhaps the Florinef was skewing the results, in addition to the fluids that I drank earlier in the morning. So, the tilt-table was unremarkable. Finally, the stress-test...I made it 14 minutes before quitting...and my HR was up around 170 BPM or so.

After those tests...I finally met with Dr. Watkins to discuss the results. Notably, he had a framed letter from Dr. Grubb on one of his side tables. We talked quite a bit about family history, historical symptoms (like IBS), etc. He eventually asked me if anyone had ever mentioned "dyautonomia" to me...to which I replied "that's why I'm here to see you.". After some more back and forth...and a physical exam...he prescribed the following:

* 150min aerobic exercise/week

* Lot's of fluids

* No caffeine

* Beta blocker (Atenolol for me)

* Clonazepam

* Lexapro

I started everything last week...and the beta-blocker has really dropped my HR (resting around 55bpm...as low as 44bpm at night in bed). I was a little worried about my BP dropping off the table, but it seems to be doing okay (110-120/65-80). I still have a bunch of troublesome symptoms (fatigue, GI stuff, hot flashes, lightheaded), but I'm hoping things will improve over the next week or so. Dr. Watkins sounded pretty confident that this protocol would "fix me up", so only time will tell. He did mention that I might experience an exacerbation of existing symptoms or some new symptoms as things start to work.

To be honest, I'm a little confused how the prescribed protocol all works...but I'm still new to all of this stuff, so I'm going to follow it to a T. He sounded very confident in his diagnosis and protocol, but I really wish I understood the science behind it all.

Regardless, I was very impressed with Dr. Watkins and would highly recommend him to anyone else.

Dani:

Lexapro still working out for you? Have you noticed any improvements since your first post to this thread?

I understand that dry skin and sweating issues are symptoms of dysautonomia, but I'm a little confused about the relationship. I've noticed that the skin on my arms can get pretty wrinkly/flaky...like it is dehydrated. However, I can produce sweat like crazy in these same areas during a workout. So, if I can sweat like a pig on a particular patch of skin...how can it also be "dry and flaky" as well?

Here's a picture of my (really) sweaty arm that also sheds dry skin like no tomorrow:

I'd just like to add that you should try the Midodrine first...since it has a very short half-life and you'll know very soon whether it works for you or not. Personally, it didn't do much for me. I felt better on OTC Phenylephrine, to be honest.

Regarding Florinef, it seemed to help for a few days...then my body appeared to get used to it. I also had more blood pooling on Florinef, so while it appeared to help with dizziness/fatigue...it introduced other undesirable symptoms.

Promoting blood flow in the shins can be tough...try walking on your heels with your toes raised...taking tiny steps. We used to do this back in the day for shin-splints...it exercises the muscle sheathing that covers the shins...which should promote blood flow.

I wonder...are there any early signs that might indicate if a particular SSRI is going to work or not? How many have experienced WORSENED symptoms early on...only to find much better overall improvement 4-5 weeks later?

Edit: Also found this (My linkhttp://www.ncbi.nlm.nih.gov/pubmed/17445831)

"From a safety perspective, significantly more venlafaxine (Effexor)-treated patients (n = 4) than duloxetine (Cymbalta)-treated patients (n=0, P =.047) experienced sustained elevations of systolic blood pressure during the fixed dosing period...."

So, that would suggest evidence that Effexor was more effective at boosting BP at those doses.

I'm glad to hear that I'm not the only one with this problem...just wish I knew how to address it. I was following the SSRI/SNRI's posts recently...I'm thinking about adding one to my regimen...as there is a chance it might help with this problem.

Also, I can force the veins to "constrict" by applying cold to my hands...here's a pic of the same hand AFTER applying a cold compress...you can see how the veins are noticeably smaller:

I have this problem as well...seems to be a recent development. The veins in my hands bulge and can be painful (burning sensation)...really wish I knew what was causing this as I'm sure it's related to the BP/HR stuff...

Here's a pic:

Just to clarify...if Lexapro is reducing the pooling...does that mean better overall peripheral vasoconstriction?

I'm curious...for those who find an AD helpful for POTS symptoms (BP/HR, pooling, etc.), what are you taking and how specifically did it help you? I didn't see this poll anywhere yet...so thought I would throw it out there.

Where did you get these charts?

From here: http://www.uptodate.com/contents/image.do?imageKey=CARD%252F1979

That sounds like pitting edema...I only had that when I was taking too much Florinef. Just curious....have you tried icing the area that is swollen to see if it goes away?

How long were you on it? I am asking because.those were just my symptoms last week until it kicked in. it was like a light switch oneday. Last week I had horrivle anxiety, slept around 18 hours per day and was also very dizzy. Then one night after I took it, it just started working. It was like day and night!

Sorry I didn't clarify...not sure how long I was on it...probably months...but my symptoms just suddenly cleared. At the time, I credited another medication (Sensipar), when it could have been Lexapro that was helping all along.

That's so interesting...I was looking at some old medical records tonight, and noticed that I was taking Lexapro 2.5mg 4-5 years ago when I anxious/dizzy/fatigued. I'm fascinated that it appears to resolve blood-pooling as well.

Keep us posted...perhaps another week or two will go by and you won't have any "gaps" in your symptoms between doses.

So happy for you...what is your dose and how long did it take to kick in? Did it resolve blood pooling, or was that not an issue for you?

Congrats

Found this image which attempts to illustrate the differential HR/BP response patterns for NCS, POTS, and autonomic failure in a tilt-test. Two questions:

1. Based upon your experience/research, is this an accurate representation? I realize some POTS might present with higher BP on TILT...but it's the HR response I'm interested in.
   
2. Does "autonomic failure" generally encompass things like PAF and MSA?
   

Just recently, I've started to experience what feels like bladder "pressure". It seemed to coincide a bit with starting Florinef...so I'm not sure if it's a matter of more blood pooling in the abdomen or something else going on. Makes me feel like I have to pee all the time...so I wanted to check to see if anyone else experiences this.

In hindsight now, knowing that my daughter doesn't have enough norepinephrine and her body doesn't constrict the blood vessels well at all, SSRI's were a terrible choice. We weaned her off them, but probably faster than one should....

I'm curious...did you try any Norepiniphrine reuptake-inhibitors? My experience is similar to your daughters...my conditions worsened on an SSRI (Zoloft)...although I only gave an it two weeks before I bailed.

How long were you on it for? It can worsen OI in the beginning.

I gave Zoloft about a week or two @ 25mg (??)...then crawled to my Cardiologist looking for answers. It definitely dilated the veins in my hands MORE than normal. He recommended stopping it.

I searched around before posting this...but does anyone feel WORSE on an SSRI? I tried Zoloft a couple of months ago...made me feel MORE dizzy, and I actually noticed the veins on my hands/arms were larger when on Zoloft. Not sure why this is the case...but I'm sure there's an explanation for it.

Anyone else?

I live near Atlanta and have already been down this road...you'll likely find that there isn't anyone local who is versant in dysautonomia. Take a look at the MVP & Autonomic Center in Birmingham. I have an appt. w/Dr. Watkins next week. Didn't do anything special...just gave them a call and scheduled it.

Another thing I've noticed in the past two weeks is increased lower-abdominal pressure/pain and arm/hand veins that protrude quite noticeably. I assume this is "pooling"...which is probably worsened by Florinef due to increased overall available volume.

Has your thyroid been tested?

Yes -- TSH was 1.13 (.4-45 normal) on 03/2011. TSH was 1.72 and T4 was 1.5 on 11/2010.

My surgery was 3/15...I had 2 good weeks GI-wise, and it's been downhill since.

I don't get it...just 6 months ago I was getting the occasional palpitation with chest pain and some slowed digestion, which I thought was GERD at the time. I could eat pretty much anything I wanted ...although I'd pay for it with GERD if I wasn't careful...so I stuck with things like pasta, bagels, etc. Switched from Prilosec 20mg OD to Prevacid 60mg BID...which eliminated the palpitations (??) but made me anxious. Started Remeron/Clonazepam to battle the anxiety...which made me dizzy and gave me tinnitus. Stopped Remeron and tried Zoloft...which made me even more dizzy/anxious. Finally discover a bad gallbladder 2 months ago...and GERD disappears with great digestion for 2 weeks, and no heartburn despite reverting back to Prilosec 20mg...so I discontinue all meds (except Prilosec 20mg) and think I'm out of the woods. Not so.

Fast-forward to today...I'm incredibly dizzy/fatigued with high HR's unless I'm taking Florinef...very dry skin on arms/legs, VERY slow/poor digestion (can barely eat anything despite Domperidone/Ery). At least I don't have the horrific GERD anymore, but what gives? You guys are the experts...what can progress so quickly like this?

At least I'm scheduled to visit Dr. Watkins in Birmingham next week...but I'm getting pretty frustrated with this.