Hoosierfan

Mandy & Potluck -- I guess it's that kind of week for us three!! Mandy, as for your Klonopin, the only thing I can tell you is that my Pdoc prescribed it in .125 wafers, and the only thing I was using it for was for the jitters / anxiety rush that came with starting my SSRI that kept me jittery so I wouldn't sleep. For that reason, my doc suggested I start with .125 when I was ready for bed, and take 1 wafer after 20 min if I didn't fall asleep, another wafter after another 20 min if I wasn't asleep, etc. Once I figured out how many to take, that was the max dose for me to take each night. Several years ago I had such bad anxiety / jitters from the Effexor it took me to .75 to fall asleep. Last October I only needed .125 (go figure!). I would check with your doc about the taper....I've always found when I had to taper that it was better for me to do a consistently daily dose (i.e. .25 every day) as opposed to one day off, one day on, because that just made my nervous system confused. I hate being on meds as well, but I've always found that I do better when I play the tortoise -- slowly up, slowly down, and give my body 4-6 weeks in between changing doses of anything to let it acclimate. Oh, and when you get to it (if you need to go this slow / small), I cut my .125 Klonopin in quarters as my last taper so I was taking .03!!)

Mandy, it will. I am going through a Klonopin wean right now myself. (Been completely off for 10 days) and my tummy is just a wreck. I notice in your earlier post that you are on Lexapro -- did you just start that? When I started Effexor (years ago), it was horrible on my tummy for several weeks. The only thing that healed it up was Prilosec. I don't doubt that your wean down on Klonopin might be upsetting your tummy because the Lexapro is actually the culprit, but the Klonopin calms it down (I've done the same combo when I've had to change my Effexor). The one thing that has helped the past 2 weeks that my tummy has been bad is a papaya smoothie (see my other posts about gastritis), staying away from NSAIDS, and getting back on my Prilosec. My tummy still hurts, but feels like it is making slow progress.

Read a bunch of posts since I got here regarding florinef and the fact that it is aldosterone. And, as a lot of you know I'm tapering off my Florinef because of the side effects (been on it 16 months). I recall reading somewhere that your aldosterone levels can be tested -- how do they do that? I've never had it done but wondering if I should ask my doc to do it so that we can see where my adrenals are at and monitor them as we decrease the Florinef. Also recall that even if you run the particular test while you are on florinef, it can show you if you adrenals are being suppressed by the Florinef. Thanks for the answers -- know this is probably really basic for some of you!! Cheers.

Sarah, I haven't tried it but am curious to see how you do on it. I get hypotensive the week before my period (which stumps my PCP because she says most people retain fluids during this time). I'm on Florinef right now but trying to get off b/c I can't take the side effects. Does Mestonin work like Midodrine, b/c if it does I wanted to keep it as an option in my back pocket to use "as needed" just for the week before my period instead of being on the Florinef all the time. What has your autonomic doc told you causes your OI during PMS, because my PCP has no idea.

Thanks all for the feedback. The neuro symptoms I'm getting are totally different from when I started it (started it to help sleep while we were changing Effexor doses, which made me super charged). So, thinking it is the withdrawal even though we went slow. Hopefully it will start to wane soon, or I'm going to get through my whole DVD collection.

Just wondering for how long you got weird neuro / bp symptoms after you stopped taking it. I tapered very slow (last two doses were .0625 a day and .03 a day, and waiting 6 weeks in between), and have now been totally off for about 8 days. The "sedation" that I got from the Klonopin seems to be waning, but the boat dizziness is still there -- and a bit worse than it was on the medicine. I'm wondering how long it will be before it disappears. The dizziness is also causing weird neuro symptoms -- like all of a sudden I get a rush (as if something scared me) and it feels like my bp is super low but it is fine (105+). Wondering what others experienced when they stopped taking Klonopin and how long its "normal" for this stuff to go on.....trying to hang in there.

I think they are pretty cute too, but I'm biased. Thanks SO much for the papaya suggestions, it seems to have done the trick -- blended up about 2 c. of papaya, 1/2 a banana, some cantaloupe, apple juice and a bit of ice and been drinking that all day and my tummy feels SO much better. Would have added the ginger, but didn't have it on hand.

Maiysa, thanks for the recipe! Do you just blend it or do you have a juicer? I don't have a juicer, so I guess in a pinch I could blend it and then strain it if I need to? Sounds like it has all the ingredients for tummy upset that I was reading help (papaya, ginger, apples, bananas). My tummy is where I hold all my stress, so no wonder that tapering off Klonopin has done a number on it! But, after 2 days no ibuprofen, it is feeling a lot better, so I think that was the bigger culprit. Never had an issue before with ibuprofen upsetting my tummy, but I guess I've never been in situation where I've been taking 6 a day for a couple of months!

Thanks for the input. I may have my PCP get started on the referral. I'm just in a conundrum because my OH issues seem to be serotonin related (when I started Effexor they improved, when tried to taper off Effexor they started up again, and when I was on a generic they came back), but none of my docs can say "yes, that's it and you need X medication in Y amounts to manage it." My PCP is the best at it, but its a psychiatrist that prescribes the effexor and she says she has "no idea" how Effexor is used for OH / BP issues; I consulted a neuro who said "no idea, its the psych docs who prescribe the serotonin meds." (argh!). Same answer from my cardio. Never seen an endo. So, I like the idea of the CC to try and see a group of specialists (cardio, neuro, psychoneuro, and endocrinologist) who are familiar with OH issues, serotonin, and how it all interacts, and if I have any underlying deficiencies or I've just become so dependent on the meds after being on them so long that its the "withdrawal" that causes my OH (and it would go away).

Rama, about 16 months and counting, but weaning down. My PCP said she would be ok to put me on it "for life" if she felt I needed it -- she doesn't. Haven't had any issues being on it that long (except for the nasty never ending headache I've had for the last year and half, which is why we are weaning), but when I tried to get off in January after being on it a year my adrenals crashed b/c I did it too fast. Know you were concerned with some jitteryness, etc. when you started. Hope that calmed down for you.

Katy, thanks -- didn't think of that (duh!). Hubby may be on another grocery run for some fresh papaya and some canned pumpkin!! Tummy is a little better today (still burning but no vomiting) so I'm hoping a few days of detox off the Advil and only really soft stuff to eat will do it. Problem is I've lost about 7 lbs in the last 10 days, and am basically in bed all day with no energy (from not really eating much and throwing up what I do).

Jen, Hang in there girl. I just took a leave of absence as of this week from my job to try and rehab from the OH / med nightmare I am going through. For us Type As, something like this is extremely hard...the loss of our "identity" as our working selves. It's one of the hardest things I've had to deal with through all of this. If you need some support in the coming weeks and months, just send me a message.

Thanks for all the suggestions. Just really difficult because the gastritis came on just a couple of days before I stopped the Klonopin -- so I'm battling both the gastritis and the Klonopin withdrawal (ugh!). And being off the Klonopin (day #7) is making me a nervous nelly and my florinef headaches worse, so that can't be helping the gastritis. Just basically in bed in my pjs all day long while my kids run around destroying the house. Unfortunately I've been on the florinef so long (about 14 months) that my doc wants to taper me super slow to give my adrenals time to recover. So I'd love to just stop it and rid myself of the headaches (and thus the Advil and thus the gastritis!!), but I can't. Got to wait about 10 more days to taper down to my next step. Today stuck to bananas, mashed potatoes and oatmeal and sucked it up with no Advil. Tried a protein shake for calories but that came back up (grrr). Sent hubby to the store for all sorts of easy tummy foods (water-heavy fruits, yogurt, and ginger ale). I'll look into the Gaviscon Advance and see if we can find it. Katybug, we have Wegman's where I live so I was SURE I would find Papaya Puree -- I guess even Wegman's ("we have $700 / lb truffles") has its limits. No papaya puree or juice in sight! Again, thanks for all the suggestions and the encouragement as I go through this!!

Ahhh, the fun never ends. So apparently I've medicated myself right into a bad case of gastritis -- been taking 6 advil a day for the last 2-3 months to combat the florinef headaches, and then I've been withdrawing from Klonopin this week, which has completely upped my anxiety. So, now I'm saddled with a nasty case of gastritis -- really bad burning pain for about 10 days, and some vomiting. Can anyone help? I was on prilosec up until about 3 weeks ago, so doc put me back on that and upped my dose to twice a day. Been taking it since Monday and really no relief. Been trying to stay away from the Advil (down to 2 per day), but funny that the advil helps with the headaches AND helps with the gastritis pain.....but realize it will probably prolong the gastritis. More worrisome is that since my tummy's been irritated I've seen a return to low bp readings after eating. Never really monitored it before but I did catch it this week, and my bp will take a 20 pt dive to 95/55 after eating. I get symptomatic at about 85/50, so I'd rather get this thing healed up!! Been meditating, warm baths for the anxiety relief. Taking 20 mg prilosec twice a day, and sticking to a soft diet (and some protein shakes), but would appreciate any suggestions!!!

I was thinking the dysautonomic and syncope clinic at Cleveland Clinic. Not sure if that is where Grubb is at or that is somewhere else.

Oops, guessed I screwed up my terms. By "auto immune" I guess I meant "immune system" -- i.e. your disautonomia was triggered by an immune response, either an underlying immune issue or your immune system's "invasion" by a virus.

Just curious about how your doc came to that conclusion; and whether if your "disease" was caused by a virus / infection, whether docs think the "damage" is permanent or function of your ANS can be regained. I ask because I had episodes of OH maybe once every couple of years in my teens and twenties, and then it got bad when I had mono (with a good dose of anxiety / depression and tummy troubles that came with the mono). I was put on Effexor for the OH, which very much helped. Tried to go off the Effexor about 1 year later (super slow) and the OH returned and wouldn't stop. Docs chalked it up to "withdrawal" that lasted 6 months (we went back on to stop the episodes), but I've always wondered whether the mono DID actually change my ANS somehow, and that I'll need to be a "lifer" on Effexor. Don't know if there is any way to tell, so I'd be curious what others have been told, tests run, etc.

Just wondering what the wait time for a consult & testing is. Right now my PCP's theory is that I'm just in a "medication nightmare" that has lasted the last 15 months, and we're tapering off Klonopin and Florinef to try and get me back to no "drunk" dizziness, energy levels back up, no headaches (that contribute to my "on a boat" feeling all day!) and no brain fog. PCP is 99% sure its the side effects from the Klonopin and Florinef, but I told her that I'd stick it out for 3 months to get off of them, if all the stuff didn't clear up I wanted a second opinion / consult at CC. I'm super sensitive to meds, so I do buy her theory that it is all side effects, but it also means we have to go slow because my MO when we go too fast off medications is my OH starts up again.... Wondering when we need to make the decision to consult CC. Don't want to call them in June and have them say "we can get you in in 3 months!"

Abby, my husband and I just had that argument last night! he's a "push through it at all costs" kind of guy...I said, hey, I've pushed through it for 15 months and I have not improved, so can I take a step back, take a leave of absence from work, and try to start again. Kind of like learning to ride a bike....hang in there girl!

Rama, hang in there and if it doesn't settle down at the .025, know that Florinef can be compounded into smaller doses! I had the same overly energized and shakes -- took about 3-4 days to calm down but it did.

Thanks, all for the support and words of encouragement. 3 days down, and yes, I'm trying to keep thinking....once I do this I won't have to do it again, so stick it out!! Think I might have to break out the Ms. Pac-Man!!

Folks, could use some encouragement today. Dr. has taken me off of Klonopin because it was making me dizzy and super fatigued. We've tapered super slow (my last dose was .0625 mg!!), and now I've been off for three days. I'm feeling super jittery, dizzy, hot and cold flashes, vomiting, and just horrible. I know this is only for a week or two, but it is hitting me on top of the Florinef headaches I have (which is the next taper). Good news is that my systolic pressure is up 10 pts (yeah!). Haven't been to work in a week and considering a leave of absence. Could use some positive words now to keep me trucking through.....thanks, all.

Abby, hang in there. I'm going through a time too. It's very hard when our bodies are not the bodies we are used to. And, trying to get back to our "old" bodies is an exercise in frustration. I've been there and am going through that. I'm usually a 70+ hour a week attorney, two young kids, run my house like Martha Stewart and I've been battling my ongoing hypotensive issues the last 15 months. Having to work P/T (looking at taking a leave of absence) and not doing much around the house....it's very frustrating. I hear you. The things that have helped me are to journal each day and write down "all the things that went right today" and then go back and look at that. The fact that you pulled that off for your kids is great! But, I've had to learn that (a) my health is the most important thing; and ( life is much more manageable when we scale back and then can "depend" on our bodies for that reduced scale. When I had my second child, my therapist said to me, "just because you had a second kid does not mean that God added more hours to the 24 hours in a day." Some things have to give. ((hugs))

Emma, I think when you ask about adrenals not "starting up" again, it begs the question of whether there is some underlying adrenal insufficiency for that particular patient. If adrenals aren't working in the first place, don't think you could get them to "start up" again. But, assuming there isn't, I haven't seen anything to suggest that the adrenals don't start working again (I had that question as well). I've been on Florinef 3 separate times -- in 2007 for about 4 months, in 2008 / 2009 for about 6 months, and this time around we're at about 14 months. Both times before my adrenals recovered, and doc doesn't think it will be any different this time, but we just have to go slow. I don't have any underlying adrenal insufficiency that I've been diagnosed with. She's a PCP, not an endocrinologist, so take that with a grain of salt! I'd be interested in what endos have said.

Rama, I would echo lemons sentiments. My doc tends to throw me on .05 or .1 florinef without even blinking, and when I've increased at those doses, I get overly energized, not in a good way. One day I increased my dose from .05 to .1 -- that day I felt great (almost normal) energy level and stamina, but then Day #2 on .1, I had unbelievable jitteryness and felt lightheaded -- checked my bp and it was 128/84 -- super high for me. And the blistering headaches came. I felt like someone had electrocuted me! And it lasted just in the time frame you described (10 a.m. - 2 or 3), and then calmed down. So, I would go slow up, and if the split doses work, I would go for that rather than double up in the morning. Just my experience with the timing of florinef.