Monica2000

Any there other medication that works along the same lines as Florinef (raising bp) that don't make you retain fluid? I'm beginning to swell up, and I don't know that I can tolerate this, especially my face getting all puffy. What a mess! I'm not an easy patient, I know. thanks, Monica

Sure seems like drug sensitivity is a common problem for most of us, and I wonder what's the root cause of this. The low blood pressure? The body's inability to balance itself? Hormonal? Or maybe we're all basically hypersensitive in every way, and that makes us more likely to develop these autonomic problems. For a little while here I was happy I could tolerate Florinef. And today, kaboom ... jeans don't fit, I notice a double chin .... major freak out. I can live with an extra few pounds, since I"m not overweight, but if my face puffs up, I can't take it. I'm really caught between a rock and a hard place. SSRI's and the like will never work for me. I think I'm running out of options. Monica

Thanks guys. That's very helpful. I hadn't realized it takes this long to make a difference. I'll wait. So far no terrible side effects. And no, I take no other meds. None of my doctors would consider beta blockers because my blood pressure's too low, and they will lower it still. (One doctor once started writing a prescription for one ... reluctantly ... and then checked my bp one more time and said "nope, I can't." ) I can't remember why they didn't give me Midodrine. Maybe it's more likely to have side effects and I react like crazy to everything. I remember we discussed it after the TTT last September and I ended up taking nothing. And here I am. I know I shouldn't be checking my bp too often, but sometimes I'm just curious and want to know if I feel so exhausted because the bp is so low or ... just because. (??) Sometimes it's one, sometimes the other, lol. My 80-yo mother can walk up and down the hill, and I tire walking around her place. Now what's wrong with this picture? Thanks again for your advice. Monica

Thanks for the replies. At least I know I'm not crazy. I still wish I knew if people who _benefitted_ from Florinef needed a certain adjustment period, but it sounds like some people will have no luck with it no matter what. It's sad for me because I really don't tolerate medications, and at least so far I've had no terrible side effects, which is pretty amazing. It just doesn't help I'll humor my doctor, too, and stick with it for another few days. If there no change (for the better!), it's the trash can for yet another box of pills .... And then what? Monica

My doctor put me on Florinef about a month or two ago. I was reluctant to try it, but finally did when my blood pressure was too low for me to function normally. I only tried it for a few days (less than a week) because not only did my bp not go up, it actually went down at times. I stopped it, and at my doctor's insistence, I tried it again now. I started two days ago, and same thing. After I take it the bp is the same or even lower (yesterday it was around 86/40). Has anyone had similar experience with Florinef either lowering the bp or making no difference? Or else, maybe I need to stick with it for more than a week to see a difference? Also, I'm afraid to stay on it long term. Can if help if you take it for just a few weeks, or do you have to stay on it for the rest of your life (assuming it works at all)? Thanks! Monica

Thanks for the reply, Merrill, and I'm so glad you found a therapy that helped you. I hate to take up space on the POTS site for something that may be unrelated, but I'd be interested in what kind of physical therapy you did that helped. I was just sent to a therapist and had one sesssion, but he just gave me little exercises (shoulder shrugs, etc) that I can't imagine will ever help with a serious problem like this. I wonder what you did. Maybe you can reply privately, or here if others could be interested, not sure. All the best. Monica

Julie, Since you mentioned it, can you (or anyone) shed some light on the relationship --if any-- between POTS and cervical spine problems? I developed some kind of autonomic failure over the last year, with extreme fatigue, low blood pressure, an episode of fainting last year, etc. But before that I've had back and neck problems for a long time, with the cervical-related issues getting worse lately, including pain in my arm. I also get a lot of ringing in my ears, and don't know if it's from my general state or possibly from the neck problems. Is there a relationship between these two or are they simply different problems you're dealing with at the same time? Thanks and best of luck to you, Monica

I suspect most of you will think I'm nuts. But maybe POTS is playing funny tricks with all of us. I started taking Florinef about 10 days ago to raise my blood pressure. I started slow, so I'm not taking much, but it almost seems like my bp is lower after I take the drug, not higher! Shorly after I woke up today, for instance, my bp was 94/54, and now it's 88/50. It may not seem like much of a difference, as bp varies a lot. But normally my bp goes up a little during the day, not down (except at night), and I noticed this weird pattern for a few days. Could it be just a fluke or have to do with hormones and/or a minor cold I have, or does Florinef sometimes not work or work the wrong way? I dont' particularly care to take an extra drug like this if it doesn't help. BTW, I posted separately about my aldesterone working in weird ways, too (it's too high instead of too low, but my blood pressure is too low, not high as you'd expect with a high aldesterone). All this makes me wonder if my body is not so out of whack that nothing works the way it's supposed to. Monica

Indeed ... it has my endocrinolgist puzzled, too ... now that's scary. I asked him what could drive the aldesterone high like this, and he just took the easy way out ... autonomic insuffiency. Yeah, I know, but what's the trigger? One year ago I was as healthy as anyone I know.

As you can tell, you're not the only one up the middle of the night Hmmm ... POTS or Florinef?

I'm probably being paranoid, but since I tend to be extremely sensitive to drugs (a huge problem when you start having medical problems), I'd rather be safe than sorry. I'm sure most of you here experience with Florinef and would be able to advise. My doctor recently started me on this drug because of my low blood pressure. (I also have low pulse, which he doesn't know what to do about.) In any case, I read in the prescription information that long-term use of Florinef can cause (among other things) glaucoma, cataracts, damage to optical nerve, etc. This really worries me, because there's nothing in the world I fear more than losing my eyesight. (This happened to my late father after he was treated with high levels of prednisone a few years ago, and I never got over the horror of it.) So have any of you ever had vision-related problems from Florinef? What about other side effects? Any info would be appreciated! Monica

Hi again ... I had a bunch of tests done since my previous posts, a litte while ago. Although I feel pretty miserable, almost everything came back normal, except for the aldosterone, and I wonder about the connection between that and POTS problems. The strange thing is that you'd expect it to be low, but mine is HIGH (50). It doesn't seem to make sense. The renin is normal, and it should be low when the aldesternone is high, the cortisol is normal, etc. Plus high aldesterone is supposed to cause hypertension, but of course I'm the opposite. (My blood pressure was in the 80s today. Systolic.) My doctor prescribed florinef, which so far hasn't helped, but I wonder how all this fits together. I expect it just doesn't ... Monica

I'm sorry for all the questions ... I'm a little overwhelmed by all this. I looked up the medial links on the site, but needless to say, none of the top experts are either in my area or covered by my insurance. (Most likely I'll never find one covered my insurance.) Under the circumstances, where do you begin to look? I assume it would have to be a cardiologist. But the one who did the tilt table test six months ago had no further ideas about where to take this, so I've never seen him since. I've been seeing an endocrinologist recently ... would he be able to tackle this? My GP is completely clueless. My other option would be to go to a specialist at a big university/medical center and pay for a consult. But what good would it do? I couldn't afford the tests, follow-ups, etc. Thanks again for any suggestions. Monica

I've been doing a lot of reading the last few days, but the crash course leaves me a rather confused, since many of the symptoms for the various types of autonomic disorders are similar. Is there any way to tell the difference between simple POTS, Pure Autonomic Failure (which sounds like a degenrative problem), Vasovagal synocope, etc? Any insight will be much appreciated. I know I need a specialist to assess this, but I don't have one yet. (That will be my next question ) Monica

Katherine and all ... Thanks so much again for taking the time to answer my questions. I hope more answers will come over time as I try different things. I feel an urgency to resolve these issues sooner rather than later because of the adoption (suffering aside). But I know there are no magic answers. My first priority now is to try to find a specialist in this, even if I fear he/she won't be covered by insurance. Thanks again for your support, Monica

Hi everyone, and thanks so much for the pointers and support. I started reading, but there's enough out there to keep me busy for a long time! I really appreciate how supportive this group is. I'm afraid I still have lots of questions (at least until I have time to check out all the links here). To begin with, I'd like to know if my worst symptoms are the most common in others, too. -- Chest and arm pain, every single day. I had my heart checked and it passed all tests. But when I have palpitations or changes in blood pressure or pulse, chest pain follows right away. All doctors have dismissed it as anxiety, but it's not. My question is, what causes it specifically? The pain doesn't seem to come from the heart. I feel it in the chest wall. Is it caused by the heart itself or by muscle spasms .. or what? -- Changes in bp/pulse. I know that's the first symptom/definition, so you all have that. But my tachycardia is not really bad. Usually I have low blood pressure (probably caused by this, too), in the 50s, sometimes less. On good days it's 60. When my bp drops and heart rate goes up, it's in the 70s. It doesn't sound bad, but the pounding is terrible. -- Ringing in the ears ... most of the day, but especially when bp changes. The constant high pitch noise drives me crazy. Remedies I read a lot about them, but I'm not sure which, if any (other than meds, which I'd like to avoid) will help with the palpitations. I tried magnesium and it didn't help me. Compression hose: I guess that keeps blood from pooling in the legs. Does it lessen other symptoms? Raised head when sleeping -- Seems counterintuitive ... blood flowing away from the brain? What experience did you have with that? Flights: I'm doing my homework and will make sure to follow the suggestions. I'm just wondering what's the worst thing any of you experienced during a flight? I like to be prepared As for increasing salt (of which I already eat a lot) and drinking Gatorade -- when? Every day? During the worst symptoms? And how much? Answers to any of the above will be much appreciated. Meanwhile, I'll keep on reading! Monica

Hi everyone, I've been struggling with bad symptoms for nearly a year. Now I have no doubt that POTS is causing them, although I've had ups and down, and periods when it hasn't been so bad. The last few weeks have been brutal, with palps, tachycardia in the morning and rollercoasters all day. (Are these ups and downs over the months usual?) I believe it all started with a very bad virus/bronchitis last April. I can't prove it, but I had no obvious symptoms before that. Last September a tilt table test was positive, but then for a few months I was better, not sure why. Now it's bad again, and I can't find a doctor who knows a thing about this. Also, I'm extremely sensitive to medication and have low blood pressure, so I'm afraid no meds will help me. A few questions: -- Are there any proven exercises I can do to help keep blood from pooling to my legs? -- Any suggestions for flights? I will need to go on one or two very long flights in the near future and wonder what precautions to take to minimize the chance of bad episodes? -- Is this condition ever reversible, or will I live and die with it? -- Do contraceptives help? I was taking some for a while and I suspect it may have helped, but I'm not sure. And of course I'd really appreciate ANY suggestions on how to manage my symptoms. All this is happening at a time when I'm in the process of adopting a child. I know you all must be horrified that I'm going ahead in spite of my problems, but I'm determined to find a way to live a normal life. Many thanks, Monica