Discussions that mention florinef

Rare Disorders board


Hey, I was diagnosed in Sept. of last year after 6 months of testing very just about everything. The doctor put me on Nadalol, and then added Florinef. I am now having problems again so he added Modidrin. I am currently wearing a loop monitor because the doctor thinks I need a pacemnaker. This condition really sucks. I would just like my life back. They keep telling me lots of fluids and extra salt. What about you.
I am taking Toprol XL (25 mg in the morning / 50 @ bedtime)...this is the THIRD betablocker I've tried, and it seems to work pretty well, but there are still times when I think I'm going to pass out... I lost my meds for 2 days and it was AWFUL-- my heart rate was through the roof. I was told to not go w/out eating... to drink a lot of fluids and instead of a high salt intake, Gatorade was recommended... I was taking salt tablets before I was diagnosed to keep my BP up, but the swelling was awful. Keep things like a pack of peanut butter crackers w/ you in case you start feeling funny... eating something like that will usually up your BP just enough to help.. I also always use a shopping cart when in a store... it gives me something to hold on to just in case. I COMPLETELY understand the frustration and just wanting to have your life back... I'd been married for all of 2 and 1/2 months when mine started... Do you have mitral valve prolapse as well? Or any other health conditions? I also have fibromyalgia... I'm asking b/c I'm trying to see if there is a link somewhere.
Good luck!!!

[quote]Originally posted by suezq0863:
Hey, I was diagnosed in Sept. of last year after 6 months of testing very just about everything. The doctor put me on Nadalol, and then added Florinef. I am now having problems again so he added Modidrin. I am currently wearing a loop monitor because the doctor thinks I need a pacemnaker. This condition really sucks. I would just like my life back. They keep telling me lots of fluids and extra salt. What about you.

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[This message has been edited by Superwoman07 (edited 08-04-2003).]
Mine too, started with chest pain and numbness on my left side. Diziness and nausea too. This was going on for quite a while and I have had every test known to mankind. The tilt-table test diagnosed me in Sept. 02, too. When I went into the hospital in Sept. I was unconscious. I was this way for 20 minutes to a half an hour. They gave me nitroglycerine and my heart rate went down to 10 beats a minute. When they did the tilt table test, they actually lost me on the table for 30 seconds. This was the cardiologists last test before changing doctors again (I went through four cardiologists, before finding this one). I spent a total of six weeks in the hospital (at different times). I had echocardiograms, ekgs, stress tests, mri's, xray, cat scans, test vascular disorders. Like I said every kind know to mankind. With my problem I don't have a prolapse but a mitral valve regerg. It isn't a problem any of my doctors worry about. My BP is always low but with this condition my heart rate goes twice as low, rather than speeding up. It only speeds up (to a normal heart rate) when I am stressing. My BP goes up too, and then drops quickly, causing the syncope. Which lately is often, my husband couldn't handle this illness and we are getting a divorce, so everytime I have to deal with him (and I do because of the kids) my heart goes crazy. When they put me on Nadalol (40mg) it took awhile to settle my system. In fact I lost a job because I was missing work. They added the Florinef and things were fine, until recently. Now I am on Mododrin too, and they cut the Nadalol in half. It isn't doing anything for me. Today was a bad day at work. I have this monitor on 24/7 now, and surgery is inevitable. Probably in July or the beginning of August. Pacemakers are rare with people with this condition but if it is rare it is me.

Neurocardiogenic syncope and vasal vagal syncope are basically the same thing. Higher salt intake in most cases helps with that along with lots of fluids. My children are all 16 and older and they tend to worry about me, but they don't really understand this disorder. Does anyone? My current employer is alittle better with me than my last, but I have noticed that when people don't understand they tend too defend themselves from it.It is nice to be able to talk to some people who are going through the same thing, I was starting to believe I was by myself.

suezq
hi! I was so happy to find this websit. I have had trouble finding information on my condition. I have not yet been definately diagnosed with neurocardio syncope, but that is what the doctors thought I had in the past. I first had a fainting spell when I was three years old. They found nothing wrong then. But when I was seven I had two or three in one year, never more then that. I finally began to have tests when I was 14 years old, because I had an episode at in public. They did alot of tests, not much on my heart, but alot of tests on my brain. They thought I might have had epilepsy, but I did not. One time I fainted in the doctor's office when he was testing my eyesight, and when trying on a watch in a store. So they thought it could be related to pressure points. I finally had a tilt table test done, and I passed out faster than anyone they had ever seen. My heart rate flat lined. After that the tests stopped and I was put on florinef, and told I might have neurocardio syncope. The problem was, they said, is that when I faint, I have seizure symptoms, I shake a bit and my left arm moves. Does that happen with anyone else? It happens to me when I am sitting and standing, they also said that is unusual to have them when I am sitting. Well, I stopped taking florinef and didn't actually faint for four years. I thought I just grew out of it. And I was sick of doctors who couldn't help. Well, a few months ago I was standing in line to get my passport, and I just all of a sudden felt like I would faint. I had eaten and everything! I walked out of the room and laid down. They next thing i knew I was waking up and didn't know where I was. I also get very emotional and my body shakes for a while after, is that common? I ignored this episode, went to Europe and then had an episode on a plane. Two in a row actually on the plane. I ignored that also, and if I ever felt weird, like dizzy/ lightheaded/ nervous/ or that my BP was low, I just sat down and drank water, and didn't have any more for over a month. well, a week before I was leaving for school, I went to the doctor for a physical, and passed out right there in the office. He was very concerned and said I could not go away to school until they did tests and had me on medication. This has totally interfered with my life, and I really want to get to the bottom of it once and for all. My problem is that I don't have them weekly or anything, the closest together they have been is once a month, but I haven't had one since Aug. 24. What tests have you gone through? Do any of my symptoms sound normal? My concern is the type of fainting spells I have(with seizure signs) and how infrequent they are(makes it hard to test or find the right med) Nothing triggers them either, they are not consistent, they spring out of nowhere, so I can't drive far in case I have one. ANy info would help!!!!! I'm glad I am not the only one with this mysterious problem!!! The more info we share, the more we can help ourselves(and our doctors who seem stumped by my problem as well!!) I'm sick of living in fear of something happening when I am out, or worse, driving. I
I'm so glad to see so many replies on this board, I've been reading since Superwoman first posted. My daughter has POTS, very close to MVP. Do any of you experience chronic pain? My daughter has abdominal pain, left anterior chest and radiating in a band back to her spine, it starts directly under her rib cage. She also has a chronic headache. She has dizzy spells, both sitting and standing at least 4x's a day, the blood pools in her hands and feet making them turn purple and ache. She also has tremors, particularly on her left side, with these episodes. She takes florinef, has increased her water and salt intake but this isn't helping. I think she has actually gotten worse over the past 6 weeks, after 4 minutes of standing her bp is 144/30 with a pulse of 166.
The doc she is seeing now is in adolescent medicine, she's 14, he keeps telling us that this is a panic attack and she needs pysch testing. She had a positive tilt test back in April, I gave him the paperwork, he just refuses to acknowledge that this is an autonomic nerve problem. She has an appointment with a cardiologist this Thursday. I am also in the process of changeing her pcp. I am just sooo frustrated, I spent last Tues night in the Er with her for pain around her kidney area, she said it hurt to pee. Then spent Thursday & Friday as an inpatient with this ab pain. Because she has a history of GI problems, the docs just said she has "functional abdonimal pain" and sent us home. Two yrs ago she had appendix & gallbladder removed, (with six weeks), then scoped because of continued pain, they found gastrisis & ulcers.
Does anyone have this many problems?
I appreciate your input.
i appreciate your replies! We did see the cardiologist (adult, not pediatrics), he seemed to be pretty knowledgeable about POTS & NCS. After his conversation with my daughter he seemed to feel that she fit more into the NCS than POTS, but did feel it necessary to repeat the tilt table test, (that's what the adolescent doc wanted to do). We left with some Toporal and he told her to increase her Florinef back to .2mg; schedule and echocarioigram, come back in 2 wks. So, this afternoon I'm feeling pretty good.
I've read all of the articles from the NDRF, Hopkins, Vandervilt, even printed them & took them to her doctors, some of these docs act like they are absolutely insulted that I would even bother to educate myself much less give them a copy. You guys are right about finding a more supportive group, (we're in the process).
Thanks
Angie
Wow, I don't know if I should feel happy to find other people who are going through what I am or if I should be wondering how we got stuck in this predicament.

I am a teacher and was diagnosed with neurocardiogenic syncope July of this year. I would wake up with headaches which would lead to dizziness by 10am and then feeling horrible and nauseus for the rest of the day. I went through the infamous tilt table test and had my BP go from 112/62 to 55/40 and I passed out.

I also have chronic asthmatic bronchitis which doesn't allow for me to take the beta-blockers. I can only take the Florinef Acetate (which I might add made me gain nearly 10 pounds in one week). The symptoms aren't all gone, they show up everyone once in a while and it is really annoying.

My legs collapsed from under me at work in June and all I can say is I was lucky it didn't happen in front of my second graders. I don't want to gripe but dealing with the lung problems was more than enough and hopes of ever being off all meds just doesn't seem to be realistic. The doc said there is a chance that the symptoms can disappear all together so I guess I got to keep on hoping.
Magggie-
Thank you so much for the Hopkins links. I will be bringing those to my doctor!
Quetion to anyone who has taken Florinef: Did anyone experience bad weight gain or acne? And did it improve your symtoms, such as light headedness, shakiness, or mental fog? I found it didn't make a noticeable improvement, but I was not on it for long.
Thanks!!
Sdubnow,
My daughter took Florinef, she noticed a difference in her symptoms immediately. Her chronic headache went away as well as some of the lightheadness. Then this new dr. (the one that dxed moved), took her off of the Florinef, her symtoms returned, they actually seemed worse that before. Now that she saw the cardiologist on Thurs., she is on .2 florinef againsaid it helps. As far as weight gain or acne, she doesn't. Weight gain would probably be a good thing for her, she is 5'7" & 113lbs, dr.s have said her "build" probably contributes to the problems she has. I took her to the ER last week for the same abdominal pains you are decsribing except hers were on the left side, ER had no clue. Then she was admitted a couple of days later to the hospital with the same complaint, she was dxed with "Conversion Disorder", meaning they have no clue. My daughter also had a terrible migraine with this, also "Conversion Disorder", and her doc on discharge refused to give her any Immitrex to take home, though she was given Immitrex in the hospital, & had some migraine relief. Interestingly enough, she also started her period, can anyone relate to that?
I'm trying to figure out what you guys are referring to when you say "shakey"? When my kid stands too long she gets dizzy & shakes all over. But her right leg seems to shake or tremor most of the time when she is awake. The only way she can get it to stop is to engage the leg muscle, like crossing her legs sitting on it works too, but then it "falls asleep". From what I've read, this is a "resting tremor".
I messed up on my prevouis post, she doesn't has to do the TT again.
Sorry about the long rambling posts, I'm just trying to understand.

zazzaz-
haha, snow dub would probably be a better username, huh? but actually I came up with that because it is my last name and the first letter of my first, it is my user name for other things so I just used it for this. The five I put in there just because weirdly enough, someone was already using sdubnow.
Thanks for the info on Florinef. I would be scared to take something that just raised my blood pressure, if only there was better research on the actual underlying cause, what medication actually helps the abnormal triggering between the brain and the heart, if any?
harrydog-
conversion disorder is a stange one for them to come up with and if that is what they think it is, then they should have referred you to a psychiatrist. If I'm correct, conversion disorder is when something is wrong, either physically or it can be stress related mentally, and it shows up in physical symptoms. Usually these symptoms do not have a medical reason behind them and are labeled mysterious.Conversion disorder is known as a psychological disorder
(again if I'm remembering correctly).....but that is what they thought of fibromyalgia for years. So I would have her reevaluated by a doctor.They haven't found an exact reason for my abdominal pain, and it may be worse because of stress, but I am going to a GI doctor to run more tests. I appreciated my doctor referring me to someone else since she knew it was beyond her specialized expertise. You should examine all her symptoms and test all the possiblities, and conversion disorder is a cop out for a doctor, when diagnosed before everything else has been examined. Best of luck to your daughter, I've gone through the same frustration of having doctors not know or not care about what to do most of my life; and I am just on the road to handling this irritating illness, along with the other ones it seems to be connected to. Also, shakiness is what I experience generally when my blood pressure is dropping and/or haven't eaten well, it is a symptom I usually have when I feel I am, or could, faint. I'm not sure about the tremors she has, I have that in my hands sometimes when my blood sugar is low, what is her diet like?
God Bless,
sdubnow5
Hi Everyone - hope you all had a nice weekend.
Zazzaz - that's a scary high blood pressure. Have you tried just drinking more fluids and increasing salt (I think Florineff is suppose to help you retain salt). Maybe that would prevent you BP from going too high. Harry Dog - It sounds like the florinef is helping your daughter. Maybe you should get a home BP monitor to check hers. It might be helpful to check her BP when she's having one of her events. If her doc is saying "conversion disorder" I'd say its time for a new doc. My understanding is that's another term for "I don't know, therefor she must be making is all up". I think a lot of her other symptoms are related to this, just not sure how - I also have a lot of gastro-intestinal problems and constantly have abdominal pain. I also have a lot of trouble sleeping, fibromyalgia-like joint pain and TMJ syndrome (jaw pain). I'm sorry she's having "seizure" activity. I was misdiagnosed for 20 years with epilepsy. Be very careful if they start heading down that path with her. The drugs they use to treat epilepsy are really AWFUL! I too had a prescription for ativan when they thought I had epilepsy. Just to take on those occasions. It certainly helped me sleep after, but a couple of times I had a second episode after taking the ativan. Ativan should stop a seizure if it is due to Epilepsy. However, if she is fainting, the seizure is more likly due to lack of oxygen to the brain. THe ativan will nto help this, also, I believe one of the side effects is that it will lower BP, which would be bad for her. I'm not postitive about this, so you might want to look it up or ask a pharmacist.
Serendipity - thanks for that great information. Like I said earlier, I was misdiagnosed with epilepsy for 20 years because I occasionally had some seizure-like movements when I'd faint. I was still a little unsure, but reading that really helped me confirm that NCS is much more likely it. Thank you!
Someone mentioned blood sugar too. I get very hypoglycemic, epecially in the morning. Very similar symptoms as before I faint - hot sweaty, shakey, anxious, lightheaded. The only thing different when I faint is that I feel nauseous then. About half of the times I've fainted, I can trace it back to either not eating at all, or previously eating "copious" amounts of sugar (like eating an entire pan of hot-out-of-the-oven brownies for dinner and nothing else, then waking up in the middle of the night to a seizure-like faint. Now I'm being really carefull about eating lots of small healthy snacks in the morning and I've really cut down on the sugar. I'm also drinking a lot more water, eating much more salt, and sometimes drink a rehydration fluid (basically salt,potassium, sugar, water and a little juice to make it pallatable). I feel a little better, though not yet "well."

Take care everyone
Maggie

Thanks for the replies.
I took my daughter back to the dr. this afternoon to get the eeg results, they are normal. This is the dr. who thinks this is a "conversion disorder", the only reason we went was to get the results, I think the guy is a MORON. Then he starts in about the mental health thing, I'm thinking, I need this girl to go to school seizure free, the Activan is not working for her anymore, she's having 2 day now, & and all he call tell me is to go see a physicologist. Huh? He also told her, before he called me into the room that she didn't have a positive TTT, she's not dizzy all the time, & she has a "panic disorder". I asked him 3x's how she could attend school,all he could say was "that's a tough one, I'm not going to give her any meds because she's already over-medicated". She takes florinef & toprol.
We got home tonight, she had another seizure, peed all over the floor (never done that), I did get her bp 200\172 pulse 155, this is lying down, the event recorder worked for once, sent that over the phone line, the nurse said her heart rate was too high. Can she have a stroke with everything so high? We go back to cardiology on Thursday.
Thanks for the vent, hubby is still in Australia.
Angie

I was diagnosed with NCS about two and a half years ago after several months of testing. It wasn't until about 6 months ago that they finally found meds that would work to control it. I had tried Pindolol, Norpace, Florinef, and a couple other beta blockers, all while doing the whole high salt, no sugar diet. I was passing out about 15-20 a day and they were all set to put a pacemaker in me. I wanted to pursue other options because I was only 20 years old - I didn't want a pacer so they decided to try a Toprol XL 25 mg at night before bed and then ProAmatine 5 mg in the morning before I get out of bed (I have to lay in bed for about 45 minutes after taking it) and then the ProAmatine every four hours throughout the day. If you have been trying to find a med that would work for you I would higly recommend the ProAmatine - at least ask your doctor. It was very expensive when I first started on it but has since come down about half way in price. I still pass out - but only about 3 times a week on average. I'm very lucky to be this healthy. Does anyone have any form of exercise that they do? When I have tried working out I pass out but it's important to be healthy, plus I am gaining weight - and nobody likes that! :) Also, has anyone been diagnosed with this before they were pregnant? My cardiologist thinks that this will go away once I have a baby and I would like to see if anyone has had any luck with that. Last, I would like to be able to be free of this so any suggestions of things you have done to help your symptoms would be a great help. Tara
hi everyone,
I haven't been online for a while, and it's good to see more posts. I have been seeing a cardiologists, who I told to give me another tilt table test, but he wanted to do an echocardiogram, an event monitor and for me to see a neurologists. the heart results turned out normal, of course, except for a slight heart murmur. I knew it would be a waist of money, we don't have insurance. Now they want to do an eeg and an mri again, even though years ago I had that done and they were normal. They are conserned about my left arm hurting after an episode, but I think it is just lack of oxygen to the brain. I hate all these tests, especially since they never seem to show anything. the cardiologists just wants my GP to give me meds. I want to know what is wrong!!!! My heart also stops, I found out during my tilt table test, which I really feel is the only test that helps prove anything. Has anyone had any luck with an MRI or an EEG showing anything related to NCS? It's alot of money for me to fork out. I am so frustrated, Why isn't there any information or doctors out there who aren't so stumped by this problem? everyone I have seen looks at me like some mystery. I am suppposed to be going to school in New York in January and I am going wether or not they find anything. I want to tell my doctor I want to be put on medication asap, any suggestions on what I should try first, besides Florinef?
I am extremely frustrated as I know we all are. Thanks for the support.
Best of Luck to everyone.
SAra
Hi Sara - If your heart actually stopped on the tilt table test, that seems pretty conclusive, I'm not sure why they want to do other tests. Some people who's heart stops when they faint actually end up getting pace makers. My doctors thought that there wasn't actually any evidence that the heart stopping was actually dangerous in this condition and didn't think that a pacer was a good idea. But I post on another group for this and several of them have pacers and swear by them! I'm not sure what other drugs to take - everyone seems to be affected differently by them. Some of the drugs used are the florinef, proamatine, beta blockers, and SSRI antidepressants. Some people seem to be helped jsut by increasing fluid and salt, taking magnesium, licorice (be careful it can raise BP dangerously high if taken too much for too long). You say you're taking florinef - has that helped at all?
As far as I know, the MRI and EEG would only be to confirm or rule out epilepsy, and would not show anything to do with NCS. And even then, those tests are not always definitive. I had "something" on my EEG , and so they diagnosed epilepsy (it was just 'blips', but not the spike-wave pattern that would be more indicative of epilepsy), they 20 years later changed their minds to NCS, which given my total symptoms makes much more sense. I think especially since you don't have insurance, you should insist on them telling you exactly why they want these tests and what they would be looking for, then decide for yourself. You said something about a heart murmur? Is it by any chance the mitral valve? Look up on the web "Mitral valve prolapse syndrome". There is a lot of controversy about this, but there seems to be mounting evidence that this is related to NCS. Most doctors seem to still think its jsut a coincidence, some think that the MVP causes a lot of our symptoms, and some are now believing the it is actually just another symptom. It might be worth checking out.
(PS... If I were you, I wouldn't hesitate to go to school in NY - what are you studying?)
Maggie
Hi Sarah,
My daughter has had all of these tests, eeg, echocardiogram, TTT, Cscans; the only test that has given any real info is the TTT. All of these test are so expensive, we have insurance, since you don't, you need to know exactly what the dr.s are looking for. My daughter is still having siezure type activity with her condition, she does not have epilepsy. The best advice I've gotten is to make her an appointment with a dr. that specializes in dysautonomia, she has an appt. with a dr. in Ohio in June. Every dr. we've seen can't give us any answers, I don't mean to sound downbeat, but perhaps you are are the boat with us.
As meds go, my daughter takes a beta blocker to try to keep her pulse rate down, can't say it working. She was on Florinef, it made her BP skyrocket, no more of that. She is taking neurotinon for the "siezure activity", it's helping with the duration time, plus she gets an extra bang with it for her chronic pain.
If you are able go to school in New York. We are working very hard to keep our lives as normal as possible.
Take Care
Angie
Good day to you all,
what a breath of fresh air ,to find more in depth info about NCS.I was diagnosed with NCS 18 months ago after various tests,the succesful one being the tilt test.I was prescribed florineff but symptoms still persisted and was then put on atenelol 50mg per day as well.All seemed well until 6 months ago when I started to pass out again,at the momment waiting to see cardio specialist.The Doctors told me that this was not a serious 'problem' but I have failed my medical and been declared unfit to go to sea,at the momment working ashore in shipping company but now the Doctors are telling me I am not fit to drive and are looking to get my licence suspended.
I haven't ever used Prednisone - sorry I can't help. Congrats on the marriage the exciting honeymoon. Sounds fabulous.

Quote from Zazzaz:
How is everyone doing these days?

I'm good. Got married in December and spent two weeks in the Caribbean during January, so I've had a good couple of months.

I'm trying to figure out what medications I can used while TTC in a few months. My OBG/YN was a bit concerned about the florinef and suggested I switch to prednisone. I thought prednisone was harder on the body than florinef. Has anyone had experence using prednisone to manage their low bp?

Thanks ~ Z
Hi everyone,
I had a tilt table test today and found out I have neurocardiogenic syncobe. The symptoms started aroung July 9th right before I left for South Africa. I went on my trip anyway and ended up it the hospital there, they told me I had vertigo. About 3 weeks later (back in the US) I went back in to the hospital with chest pain, shortness of breath, dizziness, anxiety... I had every test know to mankind done. Finally, a blood clot in my lung was found that was supposily caused by the birth control pill. I been back in the hospital since and am now out again. My doctor thinks I have always had neurocardiogenic synclope (never noticed it before) but the pulmonary embolism (blood clot in lung) has aggrivated it. Has this happened to anyone else? I'm going on Florinef today, are there any symptoms with this medication? Also if anyone has any advice for the anxiety it would be great. I'm only 19 and I can't go to school or work right now, I just don't have the energy. Thankyou so much.
I am now on Toprol, Florinef, Midodrine. Still have to watch my fluid intake and still can get symptoms, but don't pass out completely very often. The good news is that my cardio said NOT cut my salt intake (like most docs warn you about in general), in fact he said to keep on eating slaty chips, etc.
Slightly off topic- ever freak out other docs or ER staff when they see Toprol and Florinef/Mididrine. Most of them have never heard of this and have to go look it up, or want to dismiss it as "just a little orthostatic hypotension or vaso vagal attack" (like it is nobig thing)?