Hoosierfan

Thanks, Issie. You know the "black dog" -- some days it is worse and other days it is better. I've had two episodes before, which lasted several months but responded nicely to medication and CBT. Of course, "it" tells me that it won't go away this time. Grrrr. I'm the same as you, normally up beat, tons of energy, life of the party, Martha Stewart -- so I really hate being in this place. On the aldosterone, what levels are they looking for or what are considered normal? Will they make me stop the florinef or the SSRI prior to testing (eeek...really don't think I could do that!)?

Thanks, Issie for the advice and kind words. My pcp was like "there is no way your adrenals won't pick up if we taper," but now I hear you say otherwise, so I'm glad at least I'm getting into an endo to get it checked -- still waiting on the appointment. I've been on the florinef since Jan. 2011, but never had my aldosterone levels tested. In the meantime, I scored an appointment with a holistic / integrative medicine doctor in 2 weeks -- he may be able to look at some of the things the endo will look at, but in any event I'm really excited to have someone look me from top to bottom and figure out how all the systems are relating. No question, for example, that my GI issues are related to the depression. (oh, and I don't have POTS, just regular old NMH!!). Good news is that the higher dose of effexor seems to have bumped my pressures up a little bit; Aunt Flo due this weekend so the real test will be the next couple of days.....

Folks, haven't posted here in awhile....it's been a rough six weeks or so. Florinef tapering did not go well (lots of lightheadedness, dizziness, feeling really weak, tired, and these zappy jitters I can't explain). This just from a .075 to .05 reduce....arghhh!! Anyway, the whole thing was so disconcerting to me (after 16 months of battling not feeling well and trying to find the right mix of meds), that I found myself in a major depressive episode. Been here before and it is not fun, and compounds everything else. Anyway, it is where I find myself. My pDoc is upping my Effexor dose to try and kick the depression as well as take over for the florinef. She also added some Ativan 4 x a day but it makes me dizzy and want to sleep. My docs are working on getting me in to see an endocrinologist, because they are truly stumped as to why my bp dips so badly before my period, and why I am having such trouble getting the florinef dose right. Hoping to get in within the month. I've never been to an endo, so what can I expect, what questions should I ask and what tests should I insist on? Of note, I know there is a thyroid history in my family. I know some on here treat for "borderline thyroid" -- what's the current range and thinking there? Any advice you can provide would be greatly appreciated since this will be my first foray with a doctor like this and I want to get out of it everything I can.

Thanks all, and thanks for the tip, Issie! I was going to pack my 24 oz cup that is always at my side, but now I'll make sure I put it in my carry on!

Dear hubby won a trip from his company for being top in sales last year (this while dealing with all of my medical mysteries), and the trip is this wednesday -- all expenses paid to the Atlantis in the Bahamas. Of course, I'm in the middle of my florinef taper (which is making me feel terribly weak, tired and some not so fun bp dips), and my Effexor up-tick (which is making me feel terribly jittery and nauseus), all of which are making me as anxious as a long tailed cat in a room full of rocking chairs. Still, hubby deserves this vaca and we need a break from all this medical *stuff*, so we're going (and maybe I'll pop a couple of extra Xanax just to get me on that plane!). As my doc said, "you can feel terrible at home, or you can feel terrible on the beach, in the sunshine, and with room service." Say a special prayer that all goes smoothly!!!

Yeah, Rama, my headache never went away in the 17 or so months I've been on it, so I finally decided it wasn't worth it and we are trying to get off. I was hoping my body would adjust to the Florinef, but it never quite did. The headache was significant enough to make it hard to concentrate at work, read, etc. (kind of difficult to do a good job as an attorney when your brain is foggy from too much intracranial pressure!!!) I've also found that I get the same kind of headache from the SNRI I take (Effexor) when my dose is too high OR I take it in combo with the florinef. So, I think there is something with the mix of meds that makes the headaches worse. When I was either just on florinef or am just on effexor (at the right dose), the headaches are not there.

Rama, I don't have POTS, I have NMH. She is probably right about the two weeks of yuck -- in my experience every time I up a dose on an SNRI, it gives awful side effects for about a week, then settles a bit and then the side effects go away by the end of the 2nd week (if they are going to go away). I'm in my first week of yuck right now and it is not fun. But, in the scheme of things, two weeks of yuck is worth months (or years) of health -- that's why I took some time off from work to do this!

Sounds like it might be the florinef headache -- mine has always been the "fluey" kind of headache -- like your head is too full and there is a lot of pressure, kind of what you get when a head cold starts. If my florinef is WAY too high, I get what feels like a migraine -- unadulterated pain, more focused. Maybe the 1/4 tab would have been enough?

Here you go: Horm Metab Res. 1998 Jun-Jul;30(6-7):398-403. Serotonergic regulation of adrenocortical function. Lefebvre H, Contesse V, Delarue C, Vaudry H, Kuhn JM. Source European Institute for Peptide Research, Group for Hormone Research, CHU of Rouen, France. Abstract Serotonin (5-HT) plays a pivotal role in the regulation of the hypothalamo-pituitary-adrenal axis. In particular, 5-HT is involved in the stimulation of ACTH secretion during stress. Recent data indicate that, at the adrenal level, 5-HT acts as a local regulator of corticosteroid secretion. The presence of 5-HT in the adrenal gland has been demonstrated immunohistochemically and biochemically in various species including frog, mouse, rat and human. In the mouse, 5-HT has been detected in nerve fibers while, in the frog and rat, 5-HT appears to be sequestered in chromaffin cells. In man, 5-HT is stored in perivascular mast cells. In vivo and in vitro studies have shown that 5-HT stimulates mineralo- and glucocorticoid secretion from adrenal cells. In rat, the type of receptor involved in the corticotropic effect of 5-HT is still controversial. In the frog and the human, the effect of 5-HT on the adrenal cortex is mediated through a 5-HT4 receptor subtype positively coupled to adenylyl cyclase and calcium influx. Clinical studies indicate that 5-HT4 receptor agonists stimulate aldosterone secretion in healthy volunteers and in patients with aldosterone disorders. The 5-HT4 receptor agonist cisapride and angiotensin II exert additive effects on aldosterone secretion. In contrast, cisapride has no influence on ACTH-induced aldosterone release. Collectively, these findings suggest that intra-adrenal 5-HT stimulates the secretory activity of adrenocortical cells through a paracrine mode of communication involving a 5-HT4 receptor type. Serotonergic control of corticosteroid production may be involved in the physiological control of the activity of the adrenal cortex, in particular during inflammatory stress. 5-HT may also be implicated in the pathophysiology of aldosterone disorders. PMID: 9694569 [PubMed - indexed for MEDLINE]

Really? Increased serotonin upregulates aldosterone? Is that true? It does. I found several studies while I was researching over the weekend. Apparently the more available serotonin stimulates your body to produce aldosterone. And sometimes folks who are on SSRIs or SNRIs can get false negatives for things like Addison's because it in essence covers it up. I'll see if I can find the studies I was looking at and post them. Forgot to mention that I tried Prozac too, but it made me really dizzy.

Really helped me, but get the classic headache from it. Get the same jitters that Rama gets about 3-4 days in (and feels really uncomfortable) which do settle down, so I ditto the posts about ramping up and then finding the right maintenance dose. I've been on it for a year and a half and trying to reduce it b/c of the headaches, but having trouble going off. Ramping up my Effexor to try and counteract that b/c I tend to do best on one bp med!!

Effexor. I tried Zoloft, and it burned a whole in my tummy -- awful nausea, vomiting, jitters, felt like I was on fire. Ended up in the ER it freaked me out so much. BUT, Effexor did the same thing when I first started it for about 4-5 days -- in addition to insomnia. Docs really felt like I needed it so we just pushed through w/ some tummy meds to protect my tummy and Klonopin for sleep for the first few weeks. And, when I was on the right dose it made all the difference in the world - felt 100% normal, no bp issues / syncope at all. Currently upping my dose from 75 to 112.5 (and getting the jitters!!), because ever since we reduced my dose from 112.5 to 75 in the fall I've been having pre-syncope / syncope issues and been having real difficulty reducing my florinef. I do best on Effexor and nothing else -- another reason we are upping the dose, so that I can eventually discontinue the florinef. I figure Effexor gives me a "three fer" in my control of my NMH -- (1) increased serotonin = help with vessels not being so "vagally"; (2) increased norepinephrine = increased sympathetic activity = increased vasoconstriction; and (3) increased serotonin makes your body naturally produce more aldosterone = more volume (and less florinef to accomplish that). All that being said, I have tried once to get off of Effexor and it was absolutely horrible, no matter how slow we tried to go. So, I'm a lifer (which I am ok with if it makes me feel good)!

I am on Effexor (SNRI) for NMH (not POTS), and it has been the most effective treatment for me. Helps keeps my bp up and seems to even out my nervous system too. (I have anxiety that goes along with the NMH, chicken and egg thing!). Higher doses gave me brain fog and headaches, but I was able to find a mid-level dose that worked for me. I will ditto the withdrawal issue -- I tried to go off of it a few years ago and stuck with the withdrawal for about 6 months and then just couldn't take it anymore (had lots of syncopal episodes, and anxiety went through the roof). Docs weren't sure whether it was "withdrawal" or I actually needed the med. (Grrrr). But, either way, the withdrawal is not fun and can take a long time. I also had a "psuedo" withdrawal last year when my insurance co switched me to the generic from the brand (and didn't tell me). Suffered horribly for about 7 months. All that's to say that the SNRI has been very effective for me, but know that these are not meds that are easily discontinued and once you find one that works, insist on a brand of that med because the generics have so much variability that expecially for us with the sensitive nervous systems, those "bio identical" differences can be HUGE!!! I've just accepted that I'm probably a lifer for one reason or another.

Songcanary, can I ask why you take it every other day? I've noticed something curious with florinef when I've tapered...that a couple of times that I went too low, and went back up, the first day back up was ok, but the second day back up was GREAT, and then the third day I got too much in my system (kind of like my body had adjusted somewhat to the lower dose, so that going back up a full dose was too much, but that the cut I took was also too much). Wondering if all this means that as I taper down an every other day dosing schedule would work better for me.

Ooops, should have said, that you can "shock" your body by sending it into adrenal crisis if you've been on Florinef for a long period of time and abruptly stop it -- not good. Your adrenals atrophy (actually shrink) once you start taking Florinef, so in a lot of cases you need to go slowly down so your adrenals get the message to "wake up." It seems mine are taking awhile to do that, so we are doing 4-6 weeks at .025 cut each time.

Naomi, I'm getting off of it because I took it during the year last year when I had breakthrough OH issues (that were previously controlled w/ just Effexor) -- turns out that I had been switched to generic effexor, but we didn't know for 7 months. Once we went back on the brand, I had bad headaches from the Effexor + Florinef and there was really no reason for the Florinef any longer....so, we are trying to get off of it. I did try a "semi cold turkey" (is that a term? ) in January. After being on it for a year.... .1 normal dose. Went to .05 for two weeks and then 0, and I had several syncopal episodes (not typical for me), was extremely weak, jittery, anxious, pins and needles, just felt like I was going to fall over. My doc had me go back up to .05 and that cleared most, but not all of the symptoms...then again, around my period I had severe lightheadedness, so we went back up to .075 and stabilized there for 4 weeks. Still had issues the next month around my period, but we decided we needed to try and get off of it because I do best on Effexor and nothing else.

Ahh...florinef...some love it, some hate, always lots of questions around it (how much, how long, dose every other day, etc etc etc). So, I wanted to update everyone on my florinef taper because it seems everyone asks questions about how you get off if you've been on it long term, and I've learned some important lessons. First, let me say that I have NMH, not POTS. And, for whatever reason my bp tanks right prior to my period (so men this may not apply to you you lucky dogs!!!) and that triggers my syncopal episodes. In the past, I've been on a high dose of Effexor (150 mg) and Florinef at the same time, and tapered the florinef prior to the Effexor because the two for me cause some nasty headaches. When I tapered Florinef first, I from .1 to 0 in one day with no problems. Then got my Effexor down to the "right" dose several months later. Again, no bp issues. This time, we did the opposite, we worked with the Effexor prior to the Florinef, and that made all the difference and all the difficulties. With too low of Effexor: (a) I had to reduce slow (.025 every 4 to 6 weeks) and ( even at that slow of a taper, every time I tried to reduce the Florinef, I had bp dips with each reduce, and severe syncopal episodes around my period. And, I got really jittery, weak and feeling like I had no energy. I'm no doctor, but it seems for me that the serotonin and norepinephrine in Effexor: (1) gave my bp a bump; and (2) evened out my nervous system so that there was a "buffer" with each Florinef reduce. Unfortunately, my docs didn't catch this pattern until about 6 months in, and now I have so much anxiety over the whole thing. SO, in order for me to get off the Florinef I have to go UP on the Effexor a little to give my system a little more even keel and ability to handle the Florinef reduce. I've been on Florinef for 17 months -- at the most .15. Just goes to show how complex our fun nervous systems are, but I wouldn't have seen the pattern if I hadn't been keeping records. And, for those who have trouble with reducing your florinef (if you want to go down or off), I just offer my experience as one way that may work to manage it.

Thanks for the suggestions, guys. Unfortunately I got some not so fun side effects from the small dose -- lots of insomnia the past 3 nights and nausea each morning (boo). Today I've just taken one morning dose and I'll see if one dose instead of three over the day helps with those two side effects -- I seem to really only need it in the a.m. and during my "witching week." Still would like an answer to why my bp tanks that week, but so far the research is slow. Maybe when next month comes along I'll suggest to my doc that we try 5 mg in the a.m., and just taking once a day so as to avoid the side effects.

Thanks, Wendy. Yeah, it seemed to work great yesterday, then today not so much. Good to know that can be a pattern.

Really liked the ones I ordered from Medico International and they fit well, seemed to be well made, and were reasonable. I'm returning them though, for two reasons: (1) tried them for two days and didn't seem to do bupkiss for how I felt; and (2) my Cardio suggested that the abdominal binder might make me WORSE by making it harder for the blood to return to my heart. Hmmmmmm.........

I'm in the process of slowly tapering off of Florinef since Sept. (b/c it gives me bad 24 /7 headaches) and we've been pretty successful except that for the last 5 months, my bp tanks about 10 pts and I start to have daily near syncope episodes for the week prior to my period (for which my docs have no answers as to why!). I gave it the "college try" by trying to get through these weeks and get my adrenals to adjust, but this week I threw in the towel....7 days of near syncope I could not take (plus the rest of the day I just feel like crap). So doc prescribed 2.5 mg Midodrine 3 x daily which we are going to use just during my "witching week" or when I am symptomatic while going off the Florinef (i.e. as needed). The last 2 days I tried it at 7 am, noon and 4, and my question is this .... is it supposed to work right away once you've taken it (meaning within 1/2 hour or so)? My 7 am dose doesn't seem to do too much...after I'm up and around for 15 minutes or so my bp gets down in the the 80s / low 50s and I feel lightheaded....push through it (or climb back into bed). Then around 11 or so my bp comes up enough and seems stable enough to at least get me vertical (but still slightly dizzy). The afternoon is a bit better...can manage an hour or so of light housework, errands, etc before I need a nap, cook a light dinner and take care of the kids. What do you guys think? Should the 7 am dose be helping me, and (since it is not), maybe is it too low? Or does Midodrine not work that quickly? I was really hoping this med would work since I can use it on an "as needed"... those that have systemic effects (i.e. Florinef) usually carry a lot of side effects for me and I've gotten none of the Mido side effects so far!

Thanks for all the responses noting Adrenal Burnout and the integrative docs. My PCP (who is as frustrated as I am with my sensitivity to meds and my 17 month "experiment" with different meds) is referring me to an integrative doctor within her physician group (she is part of Penn State University Hershey Medical Center) who is an MD but looks you up and down, and works with alternative treatments. Hopefully I'll get into see him soon and then I'll report back. My biggest issue right now is trying to get off the Florinef (hate the side effects), but my adrenals don't seem to be happy about it......

Anoj, I can tell you that when I would increase my Florinef dose, and my bp would spike, I would feel super jittery and lightheaded. Measured bp and it would be 125/75+ (super high for me). So, I don't get it either, but for some reason I think that high bp can make you feel lightheaded. That's been my experience.

Rich, who do you like at Cleveland? Think that will probably be my best option. My NMH issues are triggered / exagerated around my menstrual cycle (I go hypotensive the week prior), so if there is someone at Cleveland who has particular expertise with women or at least wouldn't mind consulting with one who does (whether another cardio or OB/GYN), I'd like to see them.

Thanks for the responses. My PCP did agree to give it a whirl -- 2.5 mg 3x a day as needed. We basically agreed that I can / should use it on days where either I'm symptomatic (at whatever #) or if I'm running under 100 / 60. Today I've been struggling to get above 90/50 (grrrr....) and it feels like it!! So I took a dose at 3:00. By 4:00 still running the same, then had an appointment so didn't take it again until 6:00 -- then, woa, 114/64!!!! But now it's 7:30 and I'm back down to 90/50 (rrrrr....). Looks like that's probably my timing -- in and out in about 3 to 4 hours. Will try it again tomorrow if I am running low in the a.m. (at 90/50 before bed, how could I not??) Just no clue why this happens the week before my period, and my doc is stumped too. Wish we could get at the root cause instead of just the symptom....but I guess until I get into Cleveland Clinic.....