Hoosierfan

I'm currently doing the Florinef dance (see my other posts). I was put on it in Jan. 2011 because I was having breakthrough hypotensive episodes (turns out my main bp med was changed to a generic w/o my knowledge). I'm now in the process of trying to wean down / off, because it gives me really bad headaches and brain fog that I can't shake. I was on .1 for about 6 months, then .15 for about another 4 months. Once I was back on the brand of my main bp med, my bp went back up enough points that doc was ok with tapering down. I went to .1 in October and stayed there for a few months while we were monkeying with other things. Now I'm on a schedule to reduce by .025 every 4-6 weeks. I tried it faster in January (.05 every 2 weeks), but I crashed and burned. Once you are on florinef for awhile (more than a couple of months), you need to taper slowly b/c your adrenals have atrophied. That seems to be what has happened to me. As I've tapered, I've kept religious track of my bp 3 x a day, and it has been consistently ~105/65 (which is a good target for me) even when I have reduced. I'm optomistic that this shows that my adrenals are "healing!" When I tried to go faster, I got into the low 90s/mid-50s, which is presyncope for me!

For those that are up on all the scientific literature, can you explain this article in plain English to me? I'm trying to figure out why my bp tanks (up to 10 pts) the week before my period. My PCP says that it is "unusual" and that most people's bp increases before their period, and comes down after. I'm trying to figure out if some hormone (like aldosterone) production in my cycle is wacky, and therefore can help guide testing and treatment. I came across this article, but not sure exactly what it says! http://jcem.endojournals.org/content/91/10/3981.full

Has anyone had a P450 test done? What did it tell you in relation to meds that you take, and how useful was it to you? I ask because my PCP, cardiologist and psych are pretty darn sure I'm a "poor metabolizer" of meds such as the SSRI (Effexor) I'm on, and that's why I've had such difficulties the last 5 years with "normal" doses causing severe side effects and also explains why I have such difficulty getting off of them. I've spent a heck of a lot of time in the medication merry go round, and I'm hoping that maybe this test could give my team some additional info to go on (and also, if we ever start meds in the future, what to avoid). My son was also just started on an ADHD med, and it scares the living you know what out of me given the struggle I've had with meds...so I'm thinking of asking him to be tested to if mine comes back abnormal. Any idea whether benzos and Florinef (the other two meds I take) would be informed by the P450 results? Many thanks!

Getting really bad side effects -- 24 hour really bad headaches and a spacey dizziness that won't go away. I have bouts of hypotension and generally run low, but my doc thinks we can manage without it (in the past we've used 75 mg of Effexor and that has done the trick). So I'm trying to get off the Florinef and back onto just the Effexor.

I may give it a try, but yes, being hypotensive generally, I'm a little afraid of the dehydration. No breathing issues. I just feel like crap from the side effects of the Florinef and Klonopin, and because I can't just "stop" them, I'm looking for anything that I can utilize over the next 2-4 months while they take me off of these to improve my headaches, spacey dizziness and fatigue! I'll report back if I try it!!

This may be old news to a lot of you, but for me it was a revelation. Stopped in my local apothecary yesterday (to pick up some compression stockings) and talked with the pharmacist about my Florinef taper. He told me that, yes, Florinef can be compounded if my PCP and I find that the .025 cuts are too much for me. Fingers crossed that the .025 cuts are ok -- did the first one and 4 weeks out its been ok. Second one scheduled for early next week. Nice to know there is a backup if I want to go to .01 cuts!

Lemons, thank you so much for this post. Truly inspiring for anyone rehabing or coping with any type of chronic illness. Even better, it's something we can all share with our friends and family -- here's what coping with a chronic illness feels like, the things I have to overcome everyday, and the things you can do to help. I know when it comes to my support system they have a hard time finding the line between being supportive encouragement (that helps) and pushing me too hard (which really DOES NOT!).

For those who have tried alternative therapies, anyone tried a salt room? I'm currently doing accupuncture to help with chronic headaches and fatigue, and at $100 / visit (not covered by insurance), I'm starting to look around for cheaper alternatives that might give me more bang for my buck. I'm considering massage (which would be the same price, but I think may help with circulation), and now the latest rage around me is salt rooms -- sit it them for an hour for $25. Apparently feels like spending a day at the beach. Just wondering if it might night be a good for us hypotensives b/c it might draw out fluids (same reason I try to avoid Epsom salt baths -- I want to keep all the fluid and salt in me that I can!!!). Thoughts??

I'm in a situation where I have been diagnosed with chronic hypotension, usually under control (and no side effects) on 75 mg Effexor. Due to a SNAFU last year, I was put on the generic of Effexor, and PCP added all sorts of other meds to counteract breakthrough hypotension and other nasty side effects of the generic. We've been trying to get me back to 100% function for 15 months now. I'm back on my 75 mg name brand, .075 florinef (down from .15) and a minor dose of Klonopin (down from .5). I'm still very limited in my ability to work and function on a daily basis -- PCP thinks it is side effects from the Florinef and Klonopin. My question is, how much longer do I give my PCP and my "occassionally seen" cardiologist to get me back to functioning? The plan is to taper off the Florinef and Klonopin over the next 2-3 months. I'm just scared that we'll get to June, I'll still be feeling funky, and only then realize that I should get into a specialist....and then I'll call and they'll say "see you in 3 months!" The cardiologist I see every 6 months or so usually just checks me and says "well, your PCP and you are doing a good job....keep it up!" Um, ok. There is one doctor who specializes in disautonomic disorders near me (in another cardiology practice). Wondering if I should make a prophylatic appt with him or with somewhere like Cleveland Clinic just in case this keeps going......

Allie, I should have said that my lesson in all of this struggle with Florinef has been to go UP slowly and DOWN slowly. When I say slow, I mean I go 1/4 of a .1 pill every two - four weeks, down or up. When I get symptomatic (like I did last year), my PCP just tends to throw me on .1 or .15 from 0, without even blinking. I think in doing that I missed the "sweet spot." (help with the hypotension but minimal or no side effects). I was shocked when I got on this forum at first to find that a lot of people take .025 as a maintenance / long term dose. So, now I'm going down by .025 every 4 weeks -- just to make sure I don't miss the "sweet spot" by going down too fast and end up being symptomatic again. It's a pain, but as sensitive as I am to ANY medication change, it's the best way to ensure ultimate success! Cheers!

Allie, I am in a struggle with Florinef right now, and am experiencing what you do. (For the record, I'm on .075 Florinef, 2-3 g salt supplements daily and as much water / gatorade as I can muster). I don't have POTS, but chronic hypotension. My florinef experience goes like this -- when I first get on it, I feel better for a day or two until I get hit with whatever dose my doc has prescribed (anywhere from .05 - .1). I usually have a couple of days where I feel like I am going nutty -- my head feels like it going to explode, I am super "drunk" / vertigo dizzy, and my anxiety is through the roof. It feels awful. I get hit with those episodes from about 10 am - 3 pm (I take my dose at 7 am). My bp tends to spike and I have excruciating headaches. Yet, I feel extremely lightheaded (go figure). It usually calms down in a few days. The "baseline" I then get is a bad headache, ok bp (105 - 110), and am drunk / vertigo dizzy all day. Fatigue sets in too. I can function, but probably at 60% of normal. That's how I've felt for the last 3-4 months, which is why my doc is in the process of tapering me off the Florinef (was at .1, now at .075 for 4 weeks, going to .05 in another week). I think her theory is that the increased intracranial pressure from the increased volume causes the dizziness. I can tell you that when I've been off the Florinef (and not symptomatic with syncope), I don't have any dizziness or headaches. I tried to go from .1 to 0 in about 2 weeks during January, but my adrenals crashed (not good). BUT, before they crashed and while it was getting out of my system, I noticed the dizziness and the headaches disappearing. I haven't tried any other meds so I can't give you an experience for a substitute (other than good old water, salt, and compression hose). ((Hugs))

I watch this clip from the Money Pit....makes me laugh no matter how bad of a day it might be. http://www.youtube.com/watch?v=EuElJTDR5QM&feature=related

Jen, I agree to that you are so much an inspiration to me. I've let a "boo hoo me" attitude get me down dealing with much less, so you've inspired me to pick myself back up. I ditto the "deep breathing practice" that others suggested. The program that I follow is the "Full Catastrophe Living" program from UMass -- there is a book and a set of CDs that guide you through a daily meditation and body scan (that is done laying down!). And, it has help me with the anxiety issues. ((Hugs))

When I was tested for mono in the fall of 2006, I had already been really sick for 4-5 months and they couldn't figure "it" out -- until my doc went back over my chart and said "gee, golly, we never tested for mono!" She tested me that day and it came back positive. Within two months, I was still feeling pretty crappy (hypotensive episodes in the morning, fatigue, headaches) so they tested again and I got "indicative of past infection" result. She said that it meant that my immune system was working on the virus and that I was technically in "recovery" mode. But, it took Effexor and Florinef to get my bp back up to normal ranges and give me some energy back.

I feel for you! When I've struggled with my hypotension, my worst times are the week before my period. It usually tanks up to 10 ptsfor the week prior and until about a couple days after my period starts. My GP's theory is that it is the tank in serotonin that happens in that time frame; since serotonin helps to regulate bp (and can increase it), that's why I have such a difficult time then. Sometimes I hate looking at the calendar, knowing what might be coming!!

Chaos, thanks for the response. 10g to 20g -- wholly moly! How in the WORLD do you get that much?! I figure I'm getting 3 g from my thermo-tabs, plus another 2-3 through diet (trying to stick to soups, breads, V8, gatorade). Interesting about the sudden hits of salt -- I've found my tummy can't tolerate the 1 g salt tabs, but does better with Thermo-tabs. I take them at meals. Maybe I should try and take another couple during the day, or start munching on salty snacks. Just so hard when you are working, chasing kids, etc. to try and keep track of how much salt I get unless its in nice little tabs. Thanks for the tapering schedule -- that's what my GP wants to try -- go down a quarter of a tablet every 4-6 weeks. Just wish it wouldn't take 3-5 more months of feeling crappy before I am off this stuff! Have you ever tried compression stockings? It's one thing my GP suggested I use as we taper just in case I have some dips into the danger zone. I have a pair of 8-15 mm, but that didn't seem to do anything for me yesterday. Wondering if the next step up would do anything.

Sue, thanks for the response. As I tell some of my friends who have hypertension, if only we could trade some points, we'd both be gravy!!

Let me start my first (!) post by saying THANK GOD I found this forum. I've been battling hypotension for almost 5 years now, and was truly convinced I was a zebra in a pack of one! I have lots of questions, so please bear with me while I relate my story as "quickly" as possible. I've been diagnosed with chronic hypotension (not POTS)-- started in 2006/2007 when I came down with mono that went undiagnosed for 5 months, by that time it had done a number on my system. I was near syncope every morning, and at times in the evening after eating. Doctors prescribed Effexor XR (for anxiety and to increase my BP), Florinef (.1) and Klonopin (for sleep). Took that regimen for a few months, felt like a rock star, and returned to my job full time. Florinef and Klonopin were discontinued. All was gravy until mid-2008 when I was feeling so "good" that we tried to get off the Effexor. Went slow as molasses in January (tapered over 6 months) but the hypotensive episodes returned like a banshee....anxiety also went through the roof after a couple of months, so back on the full regimen again in late 2008. Took the Florinef and Klonopin for about 6 months, and tapered off those and down to a maintenance dose of Effexor. Whole thing took about 15 months to get me feeling "normal." Again was going great, was pregnant with my second child (born in Nov. 2010), and then all **** broke loose last January. Starting getting horribly dizzy (like I'd been drinking), brain fog, fatigue, headaches, light headed episodes, and just generally felt like I'd been hit by a truck. Docs started me back on the Florinef and started messing with my Effexor doses over several months. They couldn't get me feeling any better, and were generally baffled by how horrible I felt. As it turns out, we discovered in Aug. 2011 that in January I'd been switched to a GENERIC of Effexor XR (venlafaxine)!!!!!! Switched back to the brand as soon as we figured it out, and most of my symptoms abated. Since then, we've been trying to taper off the Florinef, Klonopin and some of the Effexor to get me back to where I was last January (75 mg of Effexor and nothing else), and it has been really bumpy. I have constant headaches, fatigue, and feel flu-like. Docs think the fatigue and "crappy" feeling is the Klonopin and the headaches and dizziness (again, like I've had 3 margaritas without the benefit of having ENJOYED 3 margaritas) are the classic Florinef headache (but I get it w/o high bp). Has anyone had a similar experience with side effects, and, how did you manage tapering this stuff? Do you go by your bp or by how you feel? We tried to taper the Florinef from .1 to .05 for two weeks and then to 0, and that started the syncopal episodes again (should say my bp before the taper was running 95/55 in the a.m. and 105/65 pm). I also have a "witching week" the week before my period -- my bp usually takes a 10 pt dip for the week before my period (go figure, I read most on this forum that that week is their "best"!). I try to get 3 g of salt daily through Thermo-tabs, and about 1-2 L of water / gatorade mix. My docs haven't diagnosed me with any underlying adrenal insufficiency -- but I've never been really tested for it. Also, haven't tried any other meds. Docs are reluctant to do so since I seem to be SO sensitive to any medication we try. Ready to get back to my life -- my law practice has been P/T for the last 15 months and would really like to get back to running around with my kids!!! Thanks for all the sharing and "education" you can give this newbie. Wishing you all a "good" day!!!!!