lissy Posted February 27, 2011 Report Share Posted February 27, 2011 Hey all,I know for sure I have low B/P and low lower vascular reactivity and have been told by 2 cardios to try florinef, but this phobia of having a bad reaction (side-effects) is not allowing me to even try medication, and if I cannot overcome this I'll never know if I would be one of the few that recover.My family has become disappointed and frustrated and said someone so sick would try anything to improve their health and it somehow has become a reflection on me of am I really as sick as I say I am...I know some may reply saying I need counseling or something of that sort but I have also thought of that option but then I would just be letting a stranger convince me that everything will be ok and just try it.So thats why I'm posting it here because I don't know if this is just a fear and medications cause some sort of panic attack or I have a true sensitivity or both.Most of you have at least tried Meds that are available and I would like to know was the reactions SEVERE and is there a good reason to avoid chancing trying them?If I do try this med what should I really look out for, my everyday symptoms with POTS is hard enough to live with and manage and I hate to think I'm going to add to the list of problems.I want nothing more than to get my life back and it seems like my health is at a fixable level based on what my doctors have said please if anyone could help me with this obstacle I would be so grateful.Sincerely ,Lissy Quote Link to comment Share on other sites More sharing options...
lieze Posted February 27, 2011 Report Share Posted February 27, 2011 I have no experience with florinef but just wanted to say I understand your fear.It is normal after all we have been through.I am having the same problem with food right now.Hang in there Quote Link to comment Share on other sites More sharing options...
mkoven Posted February 27, 2011 Report Share Posted February 27, 2011 I'm also very sensitive to meds. Florinef was a miracle for me. I hesitated, but started feeling instantly better on it. I recommend starting with no more than a quarter of a pill, taken in the morning. Give it a week. If you feel somewhat better, but not better enough, keep adding a quarter pill. I take 3/4 of a pill and have for 2.5 years. It really gave me back my life. Initially I might have felt a little bit of a rush an hour after taking, but not anymore. My blood pressure is much more stable on it-- usually 115/75, instead of all over the map. I take magnesium, which indirectly keeps my potassium in check. Quote Link to comment Share on other sites More sharing options...
mwise Posted February 27, 2011 Report Share Posted February 27, 2011 Hang in there Lissy and don't be afraid to try Florinef or any medication or combination of medications. If it means getting your life back to some normal state, than I say go for it.Unfortunately, I was unable to take Florinef. I had severe side effects of extreme weakness, increased shortness of breath and swelling. Of course at the time, my intake of fluids and salt was poor which probably didn't help matters either. If you look back on some previous posts about Florinef, several members have had good luck with it. It took my Neurologists and GI doctors to get the right combination of medications and diet to get me started back with some quality of normal life. I was put on Mestinon 60mg 3xday, Midodrine 5mg 3xday, Domperidone 20mg before meals and at bedtime, low fat/low fiber diet (small meals) along with drinking 1-2 liters of fluid a day and setting small goals each day that I went from being bed bound to walking up to 2 miles a day (use of a pedometer & frequent rest periods). I am now even working again. I encourage you to talk it out. Don't hesitate to seek a professional (Counselor) to work through your fears. They are trained to deal with these things. It helped me believe in myself and work through my anxiety and fears. Again I say go for it. Good Luck and keep us posted. Quote Link to comment Share on other sites More sharing options...
mkoven Posted February 27, 2011 Report Share Posted February 27, 2011 Just to add, when I say it gave me back my life, I mean I went from having to stay reclined most of the time, to going back to work full-time, and working out an hour a day. This doesn't mean my life is "normal," but I can do most of what I want to do. Before florinef, I was in pretty bad shape. I was reluctant, because I feared it would be like prednisone, which I do NOT tolerate. It really isn't.Everyone is different, but given the potential benefit, it is probably worth a try. Quote Link to comment Share on other sites More sharing options...
hlt4275 Posted February 27, 2011 Report Share Posted February 27, 2011 Hey there! I can totally relate to your fear! I too, increasingly have terrible reactions to meds, and was recently given Florinef. I too was really apprehensive about trying it because I don't want another setback or flare (I just started coming out of my worst yet). That being said, I knew that I would never know if it would help me if I didn't try it. I figured that if I took one and had a bad reaction I would wait and try again in about a week to verify that it was, in fact, the med that caused the reaction and not a coincidental illness or something. Well, guess what? I have no side effects from it at all! Although I can't say that it is my miracle drug I can say that mornings are much easier with it. With that being said....yes, there is a chance that you could have a reaction to it, but there is also a chance that you won't and you will never know unless you give it a go. I think you've been given good advice by the previous posters to start slow with a fraction of a pill and see how it goes and work up from there. It is definitely a personal decision, and a difficult one. Hugs to you! Quote Link to comment Share on other sites More sharing options...
flower Posted February 27, 2011 Report Share Posted February 27, 2011 Hello Lissy,I too had a fear of trying medications, especially because my body was rejecting virtually everything at the time (foods, drinks, smells!)Because of my fear I decided to start with only 1 medication, and that medication ended up being the florinef.My blood pressure is still low and stuff but I think it might have helped stabilise me over time, for which I am thankful.I can honestly say I do not have 1 side-effect to report from the florinef! This is quite unusual for me...I started on a quarter tablet now I am on half/day.I wish you all the very best :-) Quote Link to comment Share on other sites More sharing options...
houswoea Posted February 28, 2011 Report Share Posted February 28, 2011 Don't give up!I just wanted to say that while I didn't tolerate florinef at all, don't let people tell you that you can't be scared. They don't know what it's like. They can't understand. I'm sure from the outside it looks like you're giving up or something, but you know you're not! That's mean. don't let those things get to you.And also, I wanted to say the counseling was the absolute best decision of my entire life and I think everyone should get one, POTS or not. They are like cheerleaders for your soul. I would not have survived without my counselors. I thought going to one would be admitting that i was crazy, but in the end, they helped me face all of the fears and struggles and depression that comes with this silly condition. So I guess what I'm saying is that I think all of us should get a counselor, and I wish you good luck with the florinef! Maybe it'll be the med that works just right for you! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted February 28, 2011 Report Share Posted February 28, 2011 i know just how you feel. I am seeing a counselor right now for that exact problem.I have literally bottles and bottles of pills i have yet to try. The worst part is, if even if im lucky enough to not have symptoms i will automatically freak myself out once i swallow the pill. I can hardly stand my sinus meds that i squirt up my nose!Askapatient.com is now my best friend. Also i google everything. My counselor says i need to stop doing that. I dont think i ever will be able to.What i tend to do is to take a bit of klonopin so i calm down enough to take my other med. I know how much it *****. I cry because i am so frustrated with this illness and myself. I know i need meds, but im just so afraid of starting new ones.i agree with the poster who said to get a counselor. Honestly best decision to help this phobia. You need to be able to take your meds. Quote Link to comment Share on other sites More sharing options...
lissy Posted March 1, 2011 Author Report Share Posted March 1, 2011 Thank you all so much I did decide to make an appointment with a counselor that specializes in phobias in about 3 weeks and I am going to get past this I know, so I will update on this subject once I accomplish at least trying the med! But I have a goal start this med before summer maybe sooner.This is a great site Lissy Quote Link to comment Share on other sites More sharing options...
gdomaracki Posted March 1, 2011 Report Share Posted March 1, 2011 I too have severe anxiety about starting new meds and discontinuing the ones Im on. Ive worried myself up so much before that Ive had panic attacks. I was on florinef for five years and it did help alot! Just watch your bp because after while it can begin to raise it too high. But you wont know if it will help you or not until you try! Best of luck :-) Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 1, 2011 Report Share Posted March 1, 2011 I encourage you to do all you believe will help you! It is okay to question the effect of various treatments and interventions on your body! You own this one body and truly know it best. Work with your helpers, caretakers, doctors to figure out what is helpful and what is detrimental. You must also have a trust of your own inner intuition. We can at times, suffer from lack of self-confidence after being beaten down and questioned unreasonably over our symptoms.I would ask you to meditate/consider in quiet contemplation which one of these four words really fit your concern and then you will better be able to manage:caution alertness and prudence in a hazardous situation; care:concern a matter that engages a person's attention, interest, or care, or that affects a person's welfare or happiness.fear a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid.phobia a persistent, irrational fear of a specific object, activity, or situation that leads to a compelling desire to avoid it.I hope you will find your way through this new phase with confidence, peace and healing.Sending you love and light,tearose Quote Link to comment Share on other sites More sharing options...
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