abnel Posted April 19, 2011 Report Share Posted April 19, 2011 I started Florinef over a month ago and titrated up to .2 mg very quickly within a week (as instructed by doctor) but ended up with the classic headache. Was told to go off them cold turkey for a week to see if the headache and dosage related. Ofcourse it did, and the headache went away immediately but I had a horrible POTS flare up for a week until I started back on the Florinef.I am now back up to Florinef 0.1 mg and slowly trying to titrate up to full dosage, but ended up in Emergency last Sunday because of severe breathing issues. They couldn't find anything except lower than normal potassium levels (3.1).One doctor seems to think low potassium can cause the HR spikes I have been having (had my heart doing 160BPM the other day just walking up a hill which isn't that hard) and laboured breathing and swallowing difficulties.Has anyone else experienced this with low potassium levels? Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted April 19, 2011 Report Share Posted April 19, 2011 When I took Florinef it seemed to worsen my MCAD/anaphylactoid episodes. I also ended up in the ER, with tachycardia, swallowing problems, shortness of breath, itching - I may have been flushing but didn't know about MCAD yet and didn't know to look for it. I also developed a frustrating repetitive dry cough at that time. There is a video from a British TV program on the Mastocytosis Society Canada website of a girl having an anaphylactic event due to Mastocytosis and when I watched it, I instantly remembered the cough I had had on Florinef. (I had the cough all the time then, but the Florinef seemed to make it worse for some reason.) Quote Link to comment Share on other sites More sharing options...
abnel Posted April 19, 2011 Author Report Share Posted April 19, 2011 Hi Sarah, my anxiety is also much worse since staying on Florinef.I think you mentioned in a previous post that you were thinking of trying it again. Did you decide to go back on it and if so how are you going with it? Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted April 19, 2011 Report Share Posted April 19, 2011 Hi lotusflower-No, I haven't tried Florinef again yet. I am trying to get the MCAD stuff under control to see how much relief I get from POTS, especially as I can exercise more without going into anaphylaxis each time. I'm on 7 meds right now (7 more than I am comfortable with) but slowly I seem to be improving. I have severe variability in my symptoms though, one day thinking I'm doing better then suddenly way worse again - never sure why (I think it's these stupid mast cell triggers and I haven't got them figured out yet.)Hope you are managing ok - you might want to check out the summary I have posted on the Mastocytosis Canada site - I am trying to politely badger a few doctors into learning what is going on with us and I wrote an overview of who and how it's going. I know you are far away but they are very kind and willing to talk to docs in other countries - it's finding the docs in our countries that is the biggest challenge I think. Quote Link to comment Share on other sites More sharing options...
Darlene Posted April 19, 2011 Report Share Posted April 19, 2011 maybe. i went to the ER when having a pots episode, and my potassium was low. Quote Link to comment Share on other sites More sharing options...
issie Posted April 19, 2011 Report Share Posted April 19, 2011 There is a video from a British TV program on the Mastocytosis Society Canada website of a girl having an anaphylactic event due to Mastocytosis and when I watched it, Sarah,Can you post the site, so we can look at it? This video and also what you posted on the Mastocytosis site? Quote Link to comment Share on other sites More sharing options...
abnel Posted April 19, 2011 Author Report Share Posted April 19, 2011 Hi lotusflower-No, I haven't tried Florinef again yet. I am trying to get the MCAD stuff under control to see how much relief I get from POTS, especially as I can exercise more without going into anaphylaxis each time. I'm on 7 meds right now (7 more than I am comfortable with) but slowly I seem to be improving. I have severe variability in my symptoms though, one day thinking I'm doing better then suddenly way worse again - never sure why (I think it's these stupid mast cell triggers and I haven't got them figured out yet.)Hope you are managing ok - you might want to check out the summary I have posted on the Mastocytosis Canada site - I am trying to politely badger a few doctors into learning what is going on with us and I wrote an overview of who and how it's going. I know you are far away but they are very kind and willing to talk to docs in other countries - it's finding the docs in our countries that is the biggest challenge I think.How frustrating for you with the mast cell triggers. I will definitely check out the summary you posted on the Mastocyosis Canada site. It's probably time I looked into this as a possible mechanism causing my POTS. It's just taken me so long to even find a doctor willing to treat my POTS, let alone find anyone willing to look into possible underlying mechanisms. All the best with the meds and I hope they continue to have a positive effect and you continue to improve. Quote Link to comment Share on other sites More sharing options...
issie Posted April 19, 2011 Report Share Posted April 19, 2011 As for the question about potassium. There is a doctor testing a RX that is a potassium med. I've questioned if this helps why not just take potassium. It has seemed to help at least one person on this site - a young boy and he has mast cell issues. I question as to whether people with mast cell and hyper pots needs additional salt and/or Florineff. Quote Link to comment Share on other sites More sharing options...
abnel Posted April 20, 2011 Author Report Share Posted April 20, 2011 Thanks Issie. I am taking extra potassium now but it doesn't seem to be helping yet, (still early days). I'm told it can take up to a week for potassium to build in your system. Fingers crossed this was the culprit causing my problems. If not, maybe Florinef or just a POTS flare. Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 20, 2011 Report Share Posted April 20, 2011 I was sent to the ER from cardiac rehab when I had a POTS flare with breathing problems. At the ER my potassium was low, but they said it could BECOME low as a result of the breathing problems. They gave me a dose of K-dur but the doc didn't have much hope that it would do anything since she thought the low potassium was the result of my symptoms and not the other way around. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted April 20, 2011 Report Share Posted April 20, 2011 Hi lotusflower-No, I haven't tried Florinef again yet. I am trying to get the MCAD stuff under control to see how much relief I get from POTS, especially as I can exercise more without going into anaphylaxis each time. I'm on 7 meds right now (7 more than I am comfortable with) but slowly I seem to be improving. I have severe variability in my symptoms though, one day thinking I'm doing better then suddenly way worse again - never sure why (I think it's these stupid mast cell triggers and I haven't got them figured out yet.)Hope you are managing ok - you might want to check out the summary I have posted on the Mastocytosis Canada site - I am trying to politely badger a few doctors into learning what is going on with us and I wrote an overview of who and how it's going. I know you are far away but they are very kind and willing to talk to docs in other countries - it's finding the docs in our countries that is the biggest challenge I think.How frustrating for you with the mast cell triggers. I will definitely check out the summary you posted on the Mastocyosis Canada site. It's probably time I looked into this as a possible mechanism causing my POTS. It's just taken me so long to even find a doctor willing to treat my POTS, let alone find anyone willing to look into possible underlying mechanisms. All the best with the meds and I hope they continue to have a positive effect and you continue to improve.Thanks so much for the kind thoughts. I do find I do much better with midodrine and MCAD meds that either alone, and am seeing slow, steady improvement (interspersed with anaphyactic episodes!). Definitely look into the whole MCAD thing - if it seems to fit with your experience you can do a trial of basic over the counter meds and then wait for your doctors to catch up! Let me know if I can help in any way. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted April 20, 2011 Report Share Posted April 20, 2011 There is a video from a British TV program on the Mastocytosis Society Canada website of a girl having an anaphylactic event due to Mastocytosis and when I watched it, Sarah,Can you post the site, so we can look at it? This video and also what you posted on the Mastocytosis site?Hi issie -Here is the video: With regard to my post it's super long and has an attachment - you don't have to pay to join MSC, just sign up (see explanation in my other post). Let me know if you'd like me to email it to you. Quote Link to comment Share on other sites More sharing options...
issie Posted April 20, 2011 Report Share Posted April 20, 2011 Thanks Sarah. I'm trying to sign up to look at the site - it says it has to be approved by someone so it may be awhile before I get to look at it. Where do I look when I get the approval? Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted April 20, 2011 Report Share Posted April 20, 2011 You just have to go here and the first topic tells you who to email to register and the details:http://cmsadmin.proboards.com/index.cgi Quote Link to comment Share on other sites More sharing options...
Victoria Posted April 20, 2011 Report Share Posted April 20, 2011 I have low potassium frequently and it does affect my HR. The difficulty swallowing and labored breathing are up for grabs as I don't yet know if it's the result of low potassium. POTS, or both. I have been unsuccessful in titrating up to the 0.1 mg of Florinef, so I only take 1/2 tablet. When I tried taking the entire tablet I had a horrible migraine and had serious panic attacks. Ugghh. Quote Link to comment Share on other sites More sharing options...
Victoria Posted April 20, 2011 Report Share Posted April 20, 2011 Excellent video, thanks so much for posting! It is eerily familiar, but I've been told my problem is with my lungs (which it isn't). No one has considered anaphalyxis for me just yet. I feel empowered with this information. Thanks again! Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted April 20, 2011 Report Share Posted April 20, 2011 I've had a few rounds of difficulty swallowing, the first being when I was experiencing severe neurological problems. Initially, I wasn't on any meds (the meds came about because of the neurological problems). Because of the brain stuff along with peripheral stuff (swallowing and urination probs), they guessed it was multiple sclerosis. They threw every test in the book at me for that (MANY MRIs, two lumbar punctures, several years of repeat MRIs, etc), and never came up with clinical test results to support that. So I was left without a diagnosis (well, seizure disorder and let's sweep those other symptoms under the rug cuz we don't know what they are....). It's only now that I"ve been thinking that the combination of central and peripheral nervous system problems match dysautonomia better than a variety of diagnoses.Anyway, that's the long way of saying that I also have had bouts of swallowing difficulty and they weren't associated with taking florinef. That's me, tho.Good luck figuring it out! Quote Link to comment Share on other sites More sharing options...
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