mkoven

I've had a lot better experience with the name brand than the generic, despite the greater price tag. I'm very sensitive to meds and increased doses. Right now I do okay with 6.25 mgs every 4 hours while awake, and 5 at night. I tried to increase and it slowed my hr too much. Before I added florinef, I would totally crash between doses. They work well together for me. I did start midodrine at 2.5 mgs, then 3.75, then 5, then 6.25. And I feel every tiny increase. I have a pill splitter. Initially it made me jittery, but I think that was just in the beginning and with the generic.

I was really reluctant to take florinef and had several doctors (who don't routinely see ans patients) caution me against it. But last summer, it was clear midodrine wasn't enough and I was a MESS. I was in the hospital with multiple daily rounds of chest pain, couldn't sit up without greying out, etc. Florinef is part of what brought some semblance of normalcy back to my life. I initally started at .1, but felt very jittery. I cut down to .05, but then was still not very functional. When I went to Cleveland, they suggested the increase to .075. My potassium has been okay. I take lots of extra magnesium, which helps your body hold on to potassium. My resting bp is a little higher, but still normal, and A LOT more stable. (Instead of swinging from 70/30-150/100, it's almost always between 110-120/65-75). I don't know if I'll have to be on this for the long haul. I talked to the pharmacist and the eds doctor and my cardiologist, and everyone agrees that in my case the benefits far outweigh the risks. As long as I don't develop high blood pressure or low potassium, it's pretty safe. I was a little jittery on it initially, but I really don't notice that anymore. It really helps me hold on to salt/fluids. Before I would just pee it all out. BTW, I was worried about weight gain, and I've actually lost two pounds! I think it has let me be a lot more active, and that is the reason.

I have bad allergies and was initially told no bb's, because they would blunt the response to an epi-pen. I don't officially have asthma, but when a doc did try me on propranolol, i felt like i couldn't breathe-- so maybe latent asthma? i also appear to have some type of coronary vasospasm, or at least that's the working diagnosis, and apparently bb's can aggravate. i am on a small dose of a calcium channel blocker-- norvasc-- for the spasm. no effect on heart rate or bp that i can tell, but chest pain a little better, and i flush more easily. i'm supposed to up the dose, but am reluctant.

I'm on .075, or three quarters of a .1 pill.

A quick and dirty test you can do is the "poor man's tilt." Have someone check your bp and hr lying, sitting, and standing, waiting for several minutes in each position. it's not as precise as the tilt and shorter, but many of us show abnormalities just by doing this. you can even do it at home and bring the doc your numbers.

Could be a pinched nerve. The L5-S1 nerve root affects the sole of the foot. After back surgery, I often felt like I had a bee sting or was walking on glass. Plantar fascitis, which I've also had, hurt me more in the arch. When it was the nerve, it hurt more when i'd move my back by bending and/or twisting at the waist.

Are they having you do anything to slow down the settling--like a brace, or pt to work on any type of stabilization? Dr, Francomano talked about these, as well as traction. We won't know the full story till I get my upright mri next week.

Hi Maxine, I'm sorry to hear everything you are dealing with. Sadly, this is suddenly very close to home. I saw Dr. Francomano yesterday, the geneticist who has worked with Dr. Mcdonnell. She also thinks I'm having brainstem issues from eds or a variant of eds. I recently had a cervical mri, which the neurologist here said showed bad discs--a lot of herniations, bulges, dessication, but nothing surgical. I went to see her because my tongue goes numb when I turn my head. She wasn't particularly concerned. I don't show chiari lying down. Well, Dr. F saw pannus overgrowth (neuro didn't) and wants the mri redone upright, to see if I have any unpright chiari or tethered cord. So no answers yet. But Dr. F said tongue numbness means compression of a nerve coming off the brainstem. It's hard to have a rare syndrome that most doctors don't know much about. It makes it hard to be listened to. I hope after we do the tests that all will conclude that my brainstem is not getting pressure on it-- I really do. I feel like a pandora's box has been opened. And I really don't want surgery of any kind. But I'm getting ahead of myself. I first have to get the scans. But I'd frankly prefer to pretend that nothing is happening. Like you, I have a bad spine, with bad discs top-to-bottom, and previous surgery at L5-S1. Sometimes surgery is necessary, but it's a bummer to think that it just fixes one local problem. the larger process (weak connective tissue) is still on the loose. And it's much more disturbing to me to think about instability at my neck/skull than lower back.

A mixed blessing. And I"ll have to fight insurance to repeat the mri in a different position. I guess if I have tethered cord, that's a relatively simple surgical fix. If it's cervical-cranial settling, I'll continue pt to work on neck stabilization and sometimes where a collar. The surgical treatment for that sounds pretty awful. If it's chiari, I think we would watchfully wait. I hope it's none of the above. I'd much rather just have loose blood vessels than something in my brain/spine. A lot to chew on. But I guess I have to get the tests first. I"m just tired of dealing with all this health $%^# I appreciated that she took me so seriously. And even told me I'm managing quite well, given the crummy circumstances. I actually got choked up at that point. I'm used to feeling (unjustifiably) like this is somehow my fault and if only I'd try harder... I know that's total bunk rationally. But I appreciated having her recognize all the effort I put in and creativity I need. (Long story short, I think my family still sort of believes that I should just cut out all my medical nonsense by sheer force will. Like I"m a loser for having health problems...).

I just got back from seeing Dr. Francomano, a geneticist specialized in connective tissue disorders. She says I definitely have a heritable connective tissue disorder that may or may not be eds. I'm not as bendy as some, but she thinks my tissue tears before it stretches. I have a relatively low Beighton score, but sublux all over the place--knees and elbows do hyperextend though. I have crummy discs in my lumbar and cervical spine much older looking than my 42 years. She thinks a lot of my ans issues are brain stem related-- either cervical-cranial settling, tethered cord, or chiari. My supine mri showed some pannus overgrowth. She wants the test repeated upright. I appreciate how thorough she was, but don't really want to have to deal with the possibility of brainstem issues. But I guess knowledge is power????

they kept me on my meds at cleveland, but i still showed pots and hypotension, with pooling. i haven't been back for followup. it was somewhat helpful, but a mixed experience.

Itching and hives seems to be part of my ans stuff too. I saw Leslie Grammer at NWMH who helped me out of an allergic hurricane. Did not connect to ans issues at all, but great for the allergic component.

I found it helped sleep and general adrenaline rushes. On the other hand, it made me feel somewhat mentally dopey, and affected my memory, even on .375 a day. I've been tapering off, by way of valium, and my brain is working better. I wish it didn't have the cognitive side effects for me--otherwise I think it helped. But I value my clearheadedness more.

Hi Cat LAdy, who's the local doc? when I get back to illinois, i'll be shopping for a new ans doc.

I've never had a problem with dextromethorphan. I just make sure there's nothing else in the preparation, esp no sudafed.

I've been taking zinc lozenges and nasal spray at the very first sign of a bug and managed to nip at least three in the bud, or only be sick for two days instead of ten. I take a lozenge every two hours and apply the zicam nasal gel just as often. It really seems to help. I also seem bug-prone, esp before my period, for some reason. And getting sleep is critical.

I have a range of tools I use to be able to get around. I have a walker with a fold down seat, a seat cane, a wheel chair, and a scooter. I always use one of them. I just cannot stand still for more than a couple minutes-- even while waiting for a streetlight to change. when feeling really well, I jus take the seatcane. I also have bad joints, so all of these help both with the potsy woozies and joint issues. I'm no longer embarrassed, but sometimes taken aback by some of the odd things people say, since I'm only 42 and don't otherwise look sick.

You'll find a lot if you search on cc, fouad, etc. I found the testing to be thorough and helpful. But it was a mixed experience. pm me for more info.

I think many of the symptoms can be pots-related, as they can come from misdirected bloodflow, as your body struggles to keep a steady flow going to organs, brain, etc.

I also have probably variant angina and now take a low dose of norvasc once a day. the doc thinks my autonomic fluctuations trigger it. Apparently the test for this is to administer ergovonine (sp?) during an catheterization to try to provoke a spasm. I didn't do this, as it's a somewhat dangerous test, and my local doc thought we could see if the meds helped. I had a full cardiac workup this summer, because I was having a lot of chest pain. One of the tests was an adenosine thallium stress test. I think it's considered a good test to see that your heart is getting a good blood supply--USUALLY. I had a false positive though, probably because breast tissue got in the way and made it look like my heart wasn't getting enough blood. So there are false positives and false negatives. I ended up having an catheterization, which is considered the "gold standard" for diagnosing cad-- but it's quite invasive. My arteries were clean. (Apparently they now say that women can have blockages in the small vessels that one can't see on a cath, and it's a gated mri that looks for small vessel disease.) I think CAT scans can also be done instead of catheterization, but that is also controversial and a lot of radiation. A nuclear stress test is probably reasonable, but no test is perfect. Mine unleashed a series of other tests...

I've recently had a spell of skipped beats. Have you had a holter monitor or event monitor , so the docs can know what the rhythm is? Mine are all pacs or pvcs and my doc said they were benign in an otherwise structurally normal heart. At the time I was having ten a minute. Doc said she wouldn't treat them unless I had twice as many. But you should have them documented. Mine were hormonally triggered. taking magnesium also helped. I still get them, butit's not as bad now.

I had around fifteen sessions of cardiac rehab and I think it is true that both aerobic and strengthening exercises CAN help us, if done in moderation, with duration and intensity GRADUALLY increased. I would initially see start and get a huge rush and drop my bp if I picked up the pace at all. But over time, I've been abl;e to do more. What I can't do is SUDDENLY increase speed/duration. Then I know I'm asking for trouble. I might add a couple minutes to my treadmill routine per week, and increase speed by tiny increments. Over time, I've been able to tolerate more. But consistency is key. I always wear compression, make sure I time my workout well with respect to meds (midodrine for me), and drink a liter of fluid with electrolytes immediately after. And I wait to leave the gym until my heart rate is in the low 90s. As tempting as it is to suddenly want to take on the world on a better day, that doesn't work for me. That may be the day that I add a MINUTE to the treadmill, but no more. I also have to time the workout for my best time of day, which is before 2pm. It's hard to figure out cause and effect, but I think the exercise has helped me. The only other thing I"ve changed since last summer when I could barely sit up is florinef. I think florinef did help me even begin to be able to exercise, but I've been on the same dose since August, and my activity tolerance has increased quite a bit since then. There have been many posts on exercise recently that one could search through. One thing I've mentioned is that I do better increasing incline rather than speed. I think the extra muscle contractions needed to go uphill (against gravity) keep the blood pumping to my head. I've also mentioned that I can't do the stationary bike for some reason. I always want to faint. My doc thinks I must be pooling more in my abdomen on the bike. I do remember that the first time I ever wanted to faint was soon after running faster than I'd ever run before, trying to keep up with a speedy friend. Although up till that point I'd been a regular jogger, that sudden increase in speed did me in. (I don't jog anymore, at least as much because of my joints). So I think being moderate and gradual is the key here. And figuring out what activities YOU can tolerate and enjoy. But I think it's safe to say that sudden bursts and spurts don't work for us.

I think it has to be individual too. Over the summer, I couldn't walk around the grocery store without feeling like I was dying. Today I was on the treadmill at 3.6 mph, 6 grade incline for almost 30 minutes. for me, a world of difference, in terms of "fitness" and ans symptoms. there are days when I have to do less, or it takes longer for my bp to kick in. and i have to exercise early in the day.

count me in on the trial! I just ordered some capsules online. my afternoon slumps are really getting to me.

I actually pee less on florinef. I do a better job holding on to fluids.