lattegirl Posted June 13, 2016 Report Share Posted June 13, 2016 Been on florinef for 3 weeks, started new job, 20 hours , 5 hour shifts on my feet after 2 weeks I had to quit.So fatigued couldn't function at home and struggling with nausea, high feelings , poor concentration , headaches, feeling faint. I am sensitive to drugs in general, does this sound like florinef is not agreeing with me or something else like exercise intolerance ?? Any thoughts would be appreciated, thanks . Quote Link to comment Share on other sites More sharing options...
statesof Posted June 13, 2016 Report Share Posted June 13, 2016 I have not personally been on florinef so I cannot comment on the idea of side effects, but did you notice if the being on your feet for 5 hours at a time had any affect on your symptoms? I only mention this because I know if I am on my feet for too long I typically will start to feel worse over time. Quote Link to comment Share on other sites More sharing options...
corina Posted June 13, 2016 Report Share Posted June 13, 2016 Have you checked your pulse? For me when I'm overly tired it's usually my heart rate going low. Just a thought of course! Quote Link to comment Share on other sites More sharing options...
shan1212 Posted June 13, 2016 Report Share Posted June 13, 2016 Were you working before this most recent job? I would wonder if it's being on your feet for 5 hour shifts that has drained you. Quote Link to comment Share on other sites More sharing options...
lattegirl Posted June 13, 2016 Author Report Share Posted June 13, 2016 3 hours ago, statesof said: I have not personally been on florinef so I cannot comment on the idea of side effects, but did you notice if the being on your feet for 5 hours at a time had any affect on your symptoms? I only mention this because I know if I am on my feet for too long I typically will start to feel worse over time. Interesting, yes I was becoming gradually more symptomatic and sometimes suddenly worse as time went on Thanks Quote Link to comment Share on other sites More sharing options...
lattegirl Posted June 13, 2016 Author Report Share Posted June 13, 2016 corina, I will check my pulse to see .Thanks. Shan1212 I was gardening for family twice a week and had similar fatigue etc but on a less scale. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 14, 2016 Report Share Posted June 14, 2016 I haven't found any side effects from florinef other than headache. But, I do find that when I push myself through activities (which is what I'd be doing g if I worked 4 days a week on my ft.), I have a build up of fatigue. I can push myself but it has a cumulative negative effect, and, eventually, I crash and feel worse and it often will take days or even a couple weeks to recover. Quote Link to comment Share on other sites More sharing options...
lattegirl Posted June 14, 2016 Author Report Share Posted June 14, 2016 Katybug, interesting, kind of sounds like fatigue is something you learn to balance with dysautomnia issues and not something you can eradicate. Quote Link to comment Share on other sites More sharing options...
yogini Posted June 14, 2016 Report Share Posted June 14, 2016 It takes some time to adjust to florinef. But when you also started a new job during the same time period, that could also be a contributor. It can be helpful to take regular measurements of your HR and BP a few times a day - sometimes they are good clues as to how you are feeling. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 14, 2016 Report Share Posted June 14, 2016 Lattegirl, Yes, the fatigue is a management issue and I think what helps is different for all of us. My cardiologist, early on, said "Well imagine being in an aerobics class all day long, wouldn't you be tired? Your heart is in aerobics class for most of the day." Things that either help me or I have heard others say help are: being well hydrated, compression gear, resting when your body says, observing how many hours of activity you can do without stressing your body and then sticking to that even if you haven't "hit the wall yet", ADHD drugs for some (off label use for POTS patients ), mestinon, controlling sugar levels. I'm sure there are others. It is trial and error to see what works for you. Also, my geneticist talks about the Law of 5%. If you can gain 5% relief from one thing, 15% from another, 10% from another, etc., you can build a lifestyle plan that cumulatively will give you some quality of life back. Quote Link to comment Share on other sites More sharing options...
lattegirl Posted June 14, 2016 Author Report Share Posted June 14, 2016 Yogini, Thanks, I haven't yet noticed much help from florinef , does it take months to know if it is beneficial? Have been taking BP and HR am and pm with no significant changes. Katybug, really helpful information, I do find sugar levels make me rough , always reaching for a banana or gi flapjack. Can changing potassium also give you symptoms? Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 14, 2016 Report Share Posted June 14, 2016 I took me about 2 months to really notice that florinef was helping....this like less dry eye/ mouth, increased bp on a consistent basis, not as thirsty all the time. What's a GI flapjack? And I'm not sure I understand your question about potassium. Quote Link to comment Share on other sites More sharing options...
lattegirl Posted June 15, 2016 Author Report Share Posted June 15, 2016 Katybug - early days for me then on florinef! I make my own gi flapjack which is slow release energy and non refined sugar so doesn't cause blood sugar spikes and therefore affect blood pressure changes. I was under the impression that florinef changes potassium level , lowering it a bit so it is good to add potassium like a banana. Quote Link to comment Share on other sites More sharing options...
yogini Posted June 17, 2016 Report Share Posted June 17, 2016 You should ask your dr but you usually have to supplement florinef with salt to ge the full benefit. Quote Link to comment Share on other sites More sharing options...
lattegirl Posted June 17, 2016 Author Report Share Posted June 17, 2016 Yogini, Yes I am salt and fluid loading. Quote Link to comment Share on other sites More sharing options...
theabrodrigue Posted June 23, 2016 Report Share Posted June 23, 2016 My doctor encouraged me to be on potassium, magnesium, and calcium supplements with Florinef, as it depletes your levels. I also have my potassium checked with a basic metabolic panel once a month. It would be worth it to ask you doctor about checking those levels to see if it is adding to your symptoms. When my potassium is low I have low energy, waves of fatigue/dropping sensations, heart rate issues, etc. I hope you're feeling better! Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted June 24, 2016 Report Share Posted June 24, 2016 Hi Lattegirl Florinef didn't work for me. I had headaches, nausea, insomnia, increased tremors and intense mood and irritability problems. With that said, I am wondering if you are using any kind of compression being on your feet that many hours? I know if I tried that I would have serious blood pooling and BP issues. That could be the cause of the fatigue. Are you having any pre-syncopal eps? Take good care ? Kaitlyn Quote Link to comment Share on other sites More sharing options...
lattegirl Posted June 28, 2016 Author Report Share Posted June 28, 2016 On 23/06/2016 at 7:03 PM, theabrodrigue said: My doctor encouraged me to be on potassium, magnesium, and calcium supplements with Florinef, as it depletes your levels. I also have my potassium checked with a basic metabolic panel once a month. It would be worth it to ask you doctor about checking those levels to see if it is adding to your symptoms. When my potassium is low I have low energy, waves of fatigue/dropping sensations, heart rate issues, etc. I hope you're feeling better! Interesting thanks, my symptoms have increased especially irregular heart beats since resigning from the job .I will certainly get I touch with my cardiologist. Quote Link to comment Share on other sites More sharing options...
lattegirl Posted June 28, 2016 Author Report Share Posted June 28, 2016 On 24/06/2016 at 2:50 AM, Kaitlyn said: Hi Lattegirl Florinef didn't work for me. I had headaches, nausea, insomnia, increased tremors and intense mood and irritability problems. With that said, I am wondering if you are using any kind of compression being on your feet that many hours? I know if I tried that I would have serious blood pooling and BP issues. That could be the cause of the fatigue. Are you having any pre-syncopal eps? Take good care ? Kaitlyn Hi Kaitlyn, Yes I wear compression socks.Ended up resigning from job with all the symptoms you described ! Now more fatigued and experiencing more palpitations, tremors, hot sweats, light headed ,foggyness.Scared myself when I felt so out of sorts I couldn't open the car door , couldn't remember how to .Also experiencing some weakness when doing things and leg cramps .Am going to contact cardiologist as I don't get what is going on . Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted June 30, 2016 Report Share Posted June 30, 2016 Lattegirl- the fatigue alone (I know for me) can cause disorientation and mental clouding. I have cognitive impairment from the fatigue and brain fog. Sounds like maybe you were pushing it too hard. That's the thing when you feel good you do more and then pay for it later. I have learned it's all about pacing. And even then life just throws you curve balls sometimes! hope all goes well with the doctor and you feel better soon! Get some rest ? Kaitlyn Quote Link to comment Share on other sites More sharing options...
lattegirl Posted June 30, 2016 Author Report Share Posted June 30, 2016 Kaitlyn, Thanks really appreciate your thoughts. Do your tremors affect certain limbs or entire body trembling as I have experienced hand and legs. Takecare Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted July 1, 2016 Report Share Posted July 1, 2016 My tremors seem to effect mostly my right hand and arm. Sometimes my left hand but never as bad as my right it seems. Weird?! My legs will feel tremor-y and weakness from fatigue but OI but I don't think it's a true tremor. My Drs haven't said too much about it. I have just figured it's part of my new normal. It definitely gets worse with stress, excitement and fatigue. You? Quote Link to comment Share on other sites More sharing options...
lattegirl Posted July 2, 2016 Author Report Share Posted July 2, 2016 Kaitlyn, I get tremors in my left hand which like you get worse with stress, fatigue etc.When I have had bad episodes I my legs are trembley, my speech stutters and slurs .Are speech issues a general symptom of OI ? Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 2, 2016 Report Share Posted July 2, 2016 I get the speech issues too when I am presyncopal. I always think people are going to think I'm drunk because that's what it feels like. Sometimes when I feel like I'm slurring, I have mentioned it to my mom or roommate and they have said they can't hear it, but there have been a couple of occasions when they brought it to my attention too. Quote Link to comment Share on other sites More sharing options...
lattegirl Posted July 2, 2016 Author Report Share Posted July 2, 2016 Yes me too, reassuring to know I am not the only one ! Quote Link to comment Share on other sites More sharing options...
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