redoctober

Did the tingling sensations ever go away for you? I tried Midodrine for a day...and it didn't seem to do anything for me...other than make my skin crawl/tingle. I would have tried upping the dose if it didn't make me feel so odd.

My Florinef headaches have gone away on .05mg...but then again, I'm not sure if it's actually working anymore or not...since I'm getting HR's in the 90's again in the morning.

So...you don't get this anymore? How did you manage to eliminate it...or did it just go away by itself?

Have any of you experienced a pretty rapid increase in HR just rolling over in bed? I just noticed this recently...like I'll awaken at 3 or 4am...turn over, and I'll notice that my HR will start to race for a few seconds or so before returning to "normal". I have to assume that this is due to pooling or poor vasonconstrictive response...but who knows.

Just checking to see if anyone else gets this...

Just an update on this...I tried stopping Florinef in lieu of Midodrine...and started feeling worse. Midodrine would definitely raise my diastolic (xx/90 or so), but I couldn't stand the skin crawling, tingling, etc. Just reminded me more that I'm having autonomic issues...I'll take a headache here/there over that. Also, pulse was much higher...lot's of hot flashes...still high HR in the morning...just felt awful. So, I've started back on .05mg - .075mg Florinef...since it seems to make me feel better than Midodrine and lasts longer.

Thanks for the feedback...I tried 2.5mg the first day (afternoon), and 2.5mg morning/noon/afternoon yesterday. I'm not sure it helped much...as my standing HR was still in the 90's. Maybe I need to bump up the dose a bit...to 5mg?

I stopped Florinef for a couple of days per my Cardio's recommendation. I restarted it yesterday afternoon...after feeling very fatigued and getting high standing HR's.

So, I just started a trial of Midodrine yesterday, and I'm trying to understand how it works. I've noticed recently that the veins on my hands/arms are very pronounced. As a vasoconstrictor, should I see any visual changes in these areas on Midodrine? I definitely feel the head tingling (and elsewhere, for that matter), but I don't notice any visible constriction of veins on my hands/arms...

If you suspect that your serum Ca++ is high because of absorption...you can try adding some magnesium citrate and potassium phytate fiber in your diet. Supposedly, phytate salts "bind" to calcium and reduce overall absorption/excretion....and magnesium citrate is known to reduce hypercalciuria.

Same here...I've had "idiopathic" hyperparathyroidism for about 10 years. A million tests (including venous sampling), multiple sestamibi's, and 2 surgeries later...the best the docs can tell is that my parathyroids "look fine", so my problem might be absorptive (BMD is always fine) or a primary renal leak (as 24h urine calcium is very high).

Incidentally, I had many of these POTS symptoms years ago...and they magically went away when I started taking Sensipar 30mg. Now, they've all come back...so I'm not sure if the POTS was pre-existing or related to serum Ca++...

Anyone here have any recent experience with the MVP Center of Alabama and Dr. Watkins? I've tentatively scheduled an appoint with Dr. Watkins 2 weeks from now...and would really love some feedback from anyone who has experience with the center and Dr. Watkins specifically.

Thanks much.

The best that I can tell is that goosebumps are a sign of the body trying to preserve heat...closing your pores, which results in "goosebumps" and pilo-erection (hair standing on end). I tend to get them mostly in the morning...on both arms.

Anyone else have dry skin where they tend to get goosebumps more often than not? I do...and I suspect it is due to the body trying to preserve heat/moisture.

Can anyone explain what this indicates, though? Are goosebumps a general indication of vasoconstriction...the body attempting to push blood back to the core in that particular region?

Just throwing this out, are some of us only hypovolemic when we pool? Either in our peripheries or splanchnic regions, so if we're tested laying down......we're normal. But when we stand, all bets are off.

Personally speaking, I tend to think that I'm more symptomatic when I get stomach pooling...which can create a viscous cycle for me with worsening GI symptoms as I tend to be IBS-C as well...especially when anxious or stressed. Not a good situation.

Anyone here taking St. John's Wort for serotonin/norepinephrine support? I noticed that it's listed as a vasoconstrictor as well (http://www.ehow.com/about_5452729_herbs-constrict-blood-vessels.html), so I'm particularly interested in how it may be helping others given it's multiple-faceted effectiveness. I just started a trial yesterday, so we'll see how it goes...

Hi

I am not on any meds but still get the goosebumps...or I can be warm and just get patches of them for no reason.

But, what exactly does that represent...inappropriate vasoconstriction in a particular area? I tend to get these more in the morning...so I really wonder if the autonomic nervous is trying to respond to morning hypovolemia via vasoconstriction. Just a theory.

I'm trying to understand the relationship between goosebumps and vasoconstriction. I tend to be "cold" in the morning...with lot's of goosebumps on my arms and legs. Is this a sign of TOO MUCH vasoconstriction going on? If so, any clue as to why it might be happening? I'm taking Florinef, but I don't believe this to be a side-effect.

Just adding to this thread...I also have a high-normal Albumin (5.1), so the notion of hyperalbuminemia relating to dehydration is interesting to me (as well as the zinc angle). Looking back, my albumin used to be 4'ish...now my past two labs have been 5.0 and 5.1 (high end of normal).

I saw an Endo this morning and he wants me to stop Florinef for two weeks to perform some tests on the adrenals. I'm not so sure I want to revert back to dizziness/anxiety for 2 weeks, but at this point, I'm not sure how much the Florinef is really helping anyway. Ugh.

Need some advice regarding Florinef. My Cardio started me on Florinef a few weeks ago...I started on .1mg and started getting really low HR (40's) and wicked headaches a few days later. However, it totally resolved the morning tachycardia...only minor increases in HR upon arising. Anyway, I backed off the dosage and have been slowly working my way back up. Recently, I'm getting the sense that my body has adjusted to the Florinef, and while I'm no longer getting headaches, I'm also experiencing more tachycardia in the morning (60's supine to 90's standing).

For those taking Florinef, does your body adjust to it and compensate via other mechanisms to limit its impact? I'm going to continue to titrate up to .1mg...but I'm fearful that it might not be working effectively anymore. Or maybe I need to give it more time....any advice is appreciated.

I just keep waiting to see the doctors, the primary says to ask the endo or cardio.

Boy, do I know how you feel. Nothing like falling between the cracks.

How about adding some salt to your diet...to increase volume and BP. You could also try some licorice tea...which will also help you to retain more water (increasing blood volume).

Have you tried Florinef yet? I was like you a few weeks ago...waking up @ 3-4am with heart racing, etc. Florinef has improved that for me...I can now sleep through the night and wake in the morning with higher BP and only mild increases in HR.

I'm still trying to figure out the adjustment period...how long it takes your body to "adjust" to a particular Florinef dosage. My Dr. prescribed .1mg and never said a thing about titrating upward to that level to minimize side-effect. I asked the nurse the other day about this...and she suggested taking .05mg for a while to see if the side-effects are minimized.

I suppose I'd just like to get some feedback from others as to how long one should stick with a particular dose-level (allowing the body to adjust) before deciding that it is too much or too little.

For those who are taking Florinef...how can you tell when you have the dosage just right? I'm trying to slowly adjust my dosage so that I don't get the terrible headaches...but I'm just not sure how to determine how much is enough. I'm at a point right now (.025mg) where my BP/HR will jump from 111/65 (64) to 121/75 (85) getting out of bed in the morning...which is better, but I'm not sure if I should be using that as a gauge or not. Obviously, I don't want the headaches and such...but I'd also love to improve some of my biggest issues, like motility problems.

Speaking of motility, I really do think that poor motility exacerbates the problem for me....when motility is slow, I get more blood pooling in the abdomen, which worsens my symptoms overall.

The Cardiologist performed a 30-day Holter, Echo, and stress test...all of which were normal. He did mention the tilt-test, but only if the stress test was abnormal. I'll ask him about the tilt-test...to see if I can convince him to order it.

I've thought about Mayo...but I'd really like to start locally first.