redoctober

Can anyone recommend any good docs in/around the Atlanta, GA area these days? I've searched the forums and have seen various recommendations in the past...but I wanted to see if anyone has any experience with some of the local GA docs that have been tossed about. My PCP keeps deferring me off to various specialists...and I'd really like to see somebody who is marginally knowledgeable in the area of autonomic dysfunction. Internist, specialist...anyone half-knowledgeable would be better than what I'm getting right now.

Thanks for the responses. I guess it's the odd supine pulse-pressure that troubles me. Florinef started to normalize things last week, but I needed to back-off my dosage due to headaches for a few days. I'm trying to titrate back up now. Regarding a work-up, I seem to be falling between the cracks. Endocrinologist refers me to my PCP. PCP refers me to the Cardiologist...who does a full workup (all normal) and prescribes Florinef. Meanwhile, I'm very symptomatic of something and doing my best just to make it through each day.

I'm not sure what to make of my BP changes in the morning, so I wanted to throw it out there to see if anyone has a similar experience. When checking my BP in bed immediately after waking up this morning, I noticed that it was 130/45 (HR 62). As soon as I stood up, my BP changed to 112/70 (HR 102). I just started Florinef last week, so I'm not sure if that has something to do with it. Does anybody have a similar experience or know what this means? Any input is appreciated...

Very good information from CL and MM...thanks so much for your input on this thread. Very valuable resource for those who will be searching for info on Florinef. One other question -- I'm still getting headaches despite having what appears to be "normal" BP. If I go exercise for a bit...my BP will come down and the headache will go away. Is there an adjustment period to the Florinef, even if you're titrating slowly?

That's what I did...I dropped my dose yesterday, and only took .025mg today...to see if I might get rid of the headache. I'll probably try that dose for a few days and see how it goes. If I still have the headache...then I'll try every other day (since Florinef has a long half-life).

Three weeks ago I would awake in the middle of the night with my heart racing in a pool of sweat....BP struggling to make 100/60. I started Florinef .1mg and started loading fluids...now I'm 130/80 and HR floundering in the 40's at night. Not nearly as dizzy/anxious as I was, but have 24/7 headache, face feels flush...a whole new set if symptoms.

Sorry to revive an old thread...but I just found this thread searching for florinef and gallbladder. I just recently had gallbladder surgery...and while my GI symptoms are much better (no more Nexium 40mg BID), my BP/HR issues are much worse. Dizziness, fatigue, low HR, cold intolerance, etc. Anyway, if surgery was a trigger for your symptoms...what were they, and what helped to turn things around for you, aside from Florinef & Erythromycin? Thanks so much.

The low HR does bother me...I was getting headaches and some "head-rush" type feelings when it drops to the 40's. The Dr. explained the the heart is simply responding to ample volume...no need to pump as hard. Didn't like how it made me feel, though...even if my BP was fine. Not crazy about those huge pauses between beats... I reduced my dose yesterday to 1/4 of .1mg...and skipped my dose today. Resting vitals now are 123/78 @ 80BPM...which would appear to be a response of the Florinef leaving my system. Perhaps I'll try every other day for a bit and see how it goes.

Well, much to my surprise, my HR didn't lower at all during the formal stress test. Here are the results: Stage HR BP -------------------------------- supine 49 130/84 standing 62 142/82 1 112 150/80 2 133 150/80 3 147 4 164 5 175 done 156 160/70 2min rest 156/70 5min rest 105 130/70 I was hoping my BP would increase a little more, but quite frankly I'm a little shocked that it increased at all. I actually asked the Dr. about it afterwards...he said that he typically sees a larger increase, but my #'s were completely plausible for somebody who lasted 15min in a stress test.

I really wonder if it's kicking in too much now...my BP just before bed is 133/84 with a HR of 43 (!). Normally it is MUCH lower this time of night. I think I'll skip a day at this point and see how things go...

I have stress test tomorrow...but I just returned from the gym where I did a quick ad hoc experiment with exercise and BP (on a StairMaster @ level 8): Time (min) BP HR ---------------------------- 0 118/73 54 2 146/83 116 7 143/81 134 17 134/73 138 I really wasn't winded at all...the Florinef does seem to help with my stamina. But I'm not sure what to make of these numbers. Does anyone else experience a BP/HR response like this...where BP gradually decreases?

So, I just started .1mg Florinef a week ago...it definitely cured the dizziness/anxiety/tremors that I was experiencing, but now I'm getting some headaches and low heart-rates (40's in the evening). My BP is also up...generally 135/87 right now. Are the headaches and low heart-rate a typical response to Florinef kicking in? If so, would backing off the dose provide a reasonable chance of alleviating these symptoms? I'm grateful not to be dizzy anymore...but the headache & HR stuff has to go...

I lasted about a month on Remeron...started getting dizzy and developed tinnitus while on it. Not sure if it was the Remeron...or POTS stuff. I only lasted about 2 weeks on Zoloft...super jittery and overwhelming anxiety. What did you take and how did it "stabilize" your BP/HR? Were you high/low beforehand...and what quantifiable impact did the meds have?

I tried two different depression/anxiety meds recently...Remeron & Zoloft. Both made me feel worse, but in different ways (Remeron made me dizzy, Zoloft made me really anxious).

I actually split my dose... .05 in the morning, the other half mid-afternoon. My heart rate is MUCH lower (like 45-50 bpm in the evening, higher in the morning). The anxiety stuff has me curious though...I was very anxious w/tremors, dizzy, poor exercise tolerance, poor sleep, waking @ 3am, etc. just over a week ago. Much calmer now (even quit Klonopin)...so I'm trying to understand why.

So, ever since I upped my fluid intake and started Florinef, my anxiety has been MUCH lower, no more tremors, and I can almost sleep through the night (no more waking up in a pool of sweat @ 3am). Not sure if I'm understanding this correctly...but is the Florinef giving my body a "break" from having to produce so much adrenalin/etc. to keep BP up? If so, does this mean that I might have been hypovolemic and Florinef is correcting this imbalance? I've also noticed that my stamina at the gym is much better...and my heart rate on the treadmill (walking, 3.5 mph) is 12-15 BMP less. Just trying to make sense of these physical changes since starting Florinef 6 days ago...

My BP and heart-rate has me so confused these days. A few weeks ago...I would wake up in the middle of the night in a pool of sweat with my heart pounding away...HR racing up to 100/110 BPM trying to get my blood pressure up. My resting HR might be somewhere around 80-90 BPM and I was dizzy and anxious all the time...lot's of tremors, etc. I've since upped my fluid intake and started Florinef .1mg...and now my resting HR can be as low as 45-50 BPM. I don't have nearly the anxiety I did a few weeks ago (less adrenalin need??)...but this low HR stuff is bothering me. For example, when I went to bed last night, I took my vitals: 106/58 @ 44 BPM (lying down). When I woke up this morning, it was 113/63 @ 62 BPM (lying down). Upon standing, my vitals were 130/85 @ 74 BPM. Now...sitting down after breakfast and drinking a cup of coffee(!)...I'm at 132/84 @ 62 BPM. I guess I don't understand how my HR can be so low now. Is there an adjustment period to the Florinef...my body now realizing that it doesn't need to work as hard to maintain BP anymore?

Speaking from experience...you really should be tapering from any of the benzo's. Fortunately, you're coming off the one that has one of the longest half-life...Valium is typically used as a last-step when tapering from some of the nastier benzo's (Xanax, etc.). I recently tapered from Klonopin (.125 BID...small dose). As mentioned earlier, show your doc a solid tapering schedule. Here's a couple of methods (I did direct): http://www.benzobuddies.org/benzodiazepine-withdrawal-methods

Does anyone else notice varying pupil dilation when they are having vision issues? I just looked at my pupils in the mirror...and while they constrict properly when exposed to light...they tend to struggle to maintain constant dilation, and vary in diameter. Does anyone else experience this? Edit: I should note that both pupils appear to wax/wane synchronously in dilation (both do it at the same time). Not sure if this is normal...or if I'm just being a hypochondriac...

Thanks, guys. So, what would the other symptoms of "hyperandrogenic POTS" be? My heart rate will really ramp up if I'm dehydrated during the day, or at night around 3-4am. I feel like I don't sweat as much as I use to, and I don't have the "stamina" that I once had for exercise, etc. Also, lot's of anxiety lately as well.

I'm having tons of anxiety surrounding my symptoms, and wanted to run a basic question past everyone here on the forum. My BP will reliably increase upon standing, as will my heart rate. Based upon what I'm reading, does this generally suggest that one has something more along the the lines of POTS-variety dysautonomia rather than system atrophy or autonomic failure? Most of the literature I've seen suggests that the latter are accompanied by low postural BP and high supine BP. Any clarification/insight here would be great. Just trying to get a grip on my symptoms and what they might mean...

Thanks for the feedback. I tried checking my BP first-thing this morning: lying down: 110/64 (73bpm) 1 minute: 117/82 (102 bpm) 3 minute: 117/81 (84 bpm) 5 minute: 123/85 (86 bpm) Regarding the Valsalva...I was looking at this doc and my pattern roughly follows the "normal" pattern for BP/HR response. Not scientific of course...but I was using it as a guideline. Thyroid has been checked recently by my PCP, I believe. He took some bloodwork...so I assume that thyroid tests were in the panel. Would any medications potentially cause this problem? Like Zoloft or any of the PPI's?

Just tried the poor-man's tilt...after dinner: lying down after 10min: 101/67 (64 bpm) standing: 116/81 (75 bpm) Those make no sense to me. It'll definitely be worse in the morning. I've been drinking more Gatorade recently...not like I've been watching my sodium, but perhaps my water intake is diluting things. I drink an Alka-Seltzer Gold before bedtime as well (sodium & potassium).

Greetings all: I started this journey thinking I had PVC's back in April 2010...occasional palpitations that might wake me at night. At the time...I also noticed that my digestion was slower...things weren't moving through me as fast as they used to. Anyway, I ignored these symptoms for the most part...until they became severe enough to land me in the hospital in Ocbtober 2011 (along with bad GERD). After consulting with my PCP and obtaining a Cardio consult...I was cleared of any cardio issues after a full workup (Echo, 30-day Holter). My PCP opted to start me on 30mg Prevacid BID + antibiotics to address the GERD and any potential h pylori...which it did nicely. I no longer had any complaints of palpitations...so I assumed they they were simply related to GERD. Nonetheless, I still had some GI complaints...motility/constipation issues and some stomach pain, along with some dizziness, tinnitus, and shortness of breath (which I attributed to the PPI's). An EGD in December 2011 was perfectly clear...as was a gastric emptying study in January 2011. Serum gastrin levels were also normal. As the days/weeks went by...I continued to feel awful...mostly in the mornings...gradually better in the afternoon. I finally insisted on a HIDA scan...which revealed a 23% ejection fraction. Hoping that a bad gallbladder might be at the root of my GI issues...I had it removed 2 weeks ago. First few days were pretty rough...but digestion appeared to be working better shortly thereafter. Nonetheless, my dizziness, tinnitus, and shortness of breath continued. I also noticed recently that my blood pressure was abnormally low...especially in the mornings. Normal BP for me is 130/85...now I need to stay VERY hydrated to come close to maintaining that BP. I'll typically sleep for about 2-3 hours...and wake up feeling like my heart is beating too fast...trying to compensate for low blood pressure. When I stand up in the morning...my heart rate might jump from 85 to 130 attempting to compensate for BP changes. It almost feels like my body's ability to maintain BP homeostasis is really off...like the veins in the body are not contracting anymore to move blood around and the heart is attempting to make up the difference. Anyway, here are my current symptoms: * Low BP unless I stay hydrated. * Othostatic hypotension unless I stay hydrated. HR increase is worst in the morning. * Dizziness. * Fatigue. * Cold intolerance. * Headache/vision issues. * Muscle twitching (had these forever). * Increased heart rate that wakes me up at night...heartburn feeling like blood pools in the abdomen. * Anxiety * Perceived weakness/tremulousness * Dry skin (arms, scalp) Stupid tests that I've done myself: * Cold hand in water...no increase in BP * Hand grip: nominal increase in BP/HR * Valsalva: seems normal...HR drops, then races with an overcompensation of BP * Deep breathing: seems normal...HR rises and slows in cycles with breathing Does anyone have any advice or input here? I have a consult with my Cardiologist on Thursday...but I would appreciate any insight that anyone has to offer...even stuff that might improve my symptoms (like sleep!). Many thanks...