Nauthiz Posted July 8, 2009 Report Share Posted July 8, 2009 My dr gave me florinef and insisted i try it. He also gave me mitrodrine and said i could try that if i wanted too. But at this point im probably going to do neither. I have a strong fear if you will, of medication because i always get bad side effects and i feel something of a bit abnormal to take it. I usually read up on all the rare side effects and immediately get turned off on the idea. It sounds like alot of people here take no medications right? Am i crazy for not wanting to do this? Quote Link to comment Share on other sites More sharing options...
all4family Posted July 8, 2009 Report Share Posted July 8, 2009 Hi,I take no medication, but try to find natural things that help me. The doctor who diagnosed me with OI wanted to see how I would do if I took no medications, and tried non-pharmacuital things such as salt, fluid, tilting the head of my bed etc. I had severe reactions to meds that the previous doctors had thought was "in my head". So I spent a lot of time getting myself sicker and sicker trying new medications, and continuing to up doses of ones that were making me sick. I ended up very sick, and eventually a neuro doctor realized it may be the medication causing at least some of my problems, and took me off. Then I began to improve. I recently found out the reason for all this is because I am missing a gene that metabolises medications. So what I say to people is to listen to their body. Have you tried sharing your concerns about trying these medications with your doctor? Maybe ask him what other alternatives there are that can help without taking any meds? Some doctors will be very open to this. I hope you find a solution to this. I know how bad it feels to be sick, and not be able to take anything for it. Suzy Quote Link to comment Share on other sites More sharing options...
Nauthiz Posted July 8, 2009 Author Report Share Posted July 8, 2009 Hi,I take no medication, but try to find natural things that help me. The doctor who diagnosed me with OI wanted to see how I would do if I took no medications, and tried non-pharmacuital things such as salt, fluid, tilting the head of my bed etc. I had severe reactions to meds that the previous doctors had thought was "in my head". So I spent a lot of time getting myself sicker and sicker trying new medications, and continuing to up doses of ones that were making me sick. I ended up very sick, and eventually a neuro doctor realized it may be the medication causing at least some of my problems, and took me off. Then I began to improve. I recently found out the reason for all this is because I am missing a gene that metabolises medications. So what I say to people is to listen to their body. Have you tried sharing your concerns about trying these medications with your doctor? Maybe ask him what other alternatives there are that can help without taking any meds? Some doctors will be very open to this. I hope you find a solution to this. I know how bad it feels to be sick, and not be able to take anything for it. Suzyi havent mentioned it to him yet. THe doctor thats doing my pots treatment is a cardio so i can never get ahold of him via phone call like a regular doctor, my regular doctor is not as knowledable about pots or dysautonomia though. I might make another appoointment with my cardio to discuss other options but he is expensive. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 8, 2009 Report Share Posted July 8, 2009 Hi Nauthiz,Many POTS patients on this website have taken those two meds you mentioned with success. Your doctor should start you on the lowest doses to start. I started with midodrine 2.5 mg three times a day (morning, noon, and suppertime). Florinef I started with 0.05mg daily for a week and checked my BP daily. You should also check your BP with midodrine, especially if you lie down within a couple hours of taking it. I worked up to 0.1mg florinef twice a day. It takes a good week for florinef to build up in your system enough to do the job.I was scared at first of the florinef because it is a steroid so it lists all the crazy side effects of steroids. I've taken prednisone at other times, and I can tell you I didn't have any of the side effects of prednisone with the florinef. I had to quit the florinef because my BP eventually got too high and I got a headache, so I weaned off and have no residual problems. I have problems with chronic frostbite in my extremities which the midodrine made worse. I really wish I could have stayed on it because I had so much energy! I'm at the point that I will take nearly anything if it will give me my life back. I know my doctors will be there if I have questions or problems. And it's always a good idea to start with the lowest dose. I take in 4-6 gms of sodium a day and 4+liters of fluid, but it hardly does me any good anymore. I know Suzy can't take any meds because her body doesn't metabolize medications in general. Often POTS patients do have odd reactions to meds too, that's why you need a physician who can monitor you. There are quite a few POTS patients on this website who have taken florinef for months or years and swear by it. Don't write off medications! I think it's probably harmful to some degree to go completely untreated with severe POTS, if it's just because of the deconditioning that results. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted July 9, 2009 Report Share Posted July 9, 2009 Hi,I am also terrified of medications, take as few possible, and have had many bad experiences with medications that have made me this way. I am currently working on a small trial of with midodrine myself actually. That being said, I would suggest that you at least give the medications a try. It would be awful if you passed something by that may have helped you get somewhat of a normal life back without even giving it a try. Besides, midodrine and florinef are relatively "benign" medications compared to some of the other options. What I do if am trying a medication is to start with a tiny dose - I literally cut the pills into 1/8 or 1/6 of a pill sometimes. For midodrine I am starting with 1/4 to 1/2 of the lowest dosage pill every few days and monitoring my symptoms and reaction afterwards. Good luck and let us know what you decide.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted July 9, 2009 Report Share Posted July 9, 2009 Honestly...I am with Thankful...i would try almost anything to get my life back at this point!! I don't worry about trying different meds...if I get a side effect I stop taking it. My life turned around 10 fold after starting beta blockers!! I could do nothing before them...now I can do a little more than nothing..right? I tried florinef and got bad headaches...so I stopped. I tried midorine and noticed no real difference so I stopped that too. I just think that whatever can help us is the answer...whatever it is....really. This is just such a monotomous, long suffering illness...if there is anything that helps alliviate the suffering we should do it. A doctor once told me about medication "that is why they made it...to help you..".Erika Quote Link to comment Share on other sites More sharing options...
all4family Posted July 9, 2009 Report Share Posted July 9, 2009 Hi again, I really should have said that I tried many medications, and had many bad side effects, before I realized it was making things worse. The thing is, if you take it, and have a problem with it, then you can always stop takiung it. If you take it and find somethng that helps then that is great. I didn't stop taking the medicines, because I didn't realize that was the problem at first. Just be aware, and you will be ok. Sorry....I didn't mean to sound pesimistic.Suzy Quote Link to comment Share on other sites More sharing options...
pat57 Posted July 9, 2009 Report Share Posted July 9, 2009 I'm with Thankful also. The med I take, Norpace has a side effect of sudden death. But it has given me my life back.FDA alert"Considering the known proarrhythmic properties of Norpace or Norpace CR and the lack of evidence of improved survival for any antiarrhythmic drug in patients without life-threatening arrhythmias, the use of Norpace or Norpace CR as well as other antiarrhythmic agents should be reserved for patients with life-threatening ventricular arrhythmias."http://www.healthline.com/goldcontent/diso...+(disopyramide) Quote Link to comment Share on other sites More sharing options...
iheartcats Posted July 9, 2009 Report Share Posted July 9, 2009 I'm with Thankful also. The med I take, Norpace has a side effect of sudden death. But it has given me my life back.FDA alert"Considering the known proarrhythmic properties of Norpace or Norpace CR and the lack of evidence of improved survival for any antiarrhythmic drug in patients without life-threatening arrhythmias, the use of Norpace or Norpace CR as well as other antiarrhythmic agents should be reserved for patients with life-threatening ventricular arrhythmias."http://www.healthline.com/goldcontent/diso...+(disopyramide)Pat. I will remember this when I'm afraid to try a new medication. LOLBut, I was very afraid to try Mestinon and a Beta Blocker. I finally have...and they work for me. I'm able to do more and feel better with them. Quote Link to comment Share on other sites More sharing options...
Brye Posted July 9, 2009 Report Share Posted July 9, 2009 I understand cardio doctors are busy but what is it about not taking any phone calls. If someone is adjusting my meds I don't understand why they can't just take a moment for a question here and there. POTS is a condition that requires some med adjusting and not always an appt is needed to do this. I've switched doctors and I have to drive a little further but I think now if I have a question about a side effect I'm having trouble controlling there will be at least a nurse who can handle a phone call and pass on a message. I'm also taking florinef with really no side effects that I've noticed on my low dose. I can tell it's helping but when I increase my dose I have too much fluid retention. I took midodrine for a while and kept a close eye on my BP. It helped but I had bad hand tremors from it so I had to stop. I think the key is to start at low doses and work your way up. Then you figure out what side effects you can stand and what you can't. I'm not a fan of taking medication but I REALLY hate passing out. Good luck!!Brye Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 9, 2009 Report Share Posted July 9, 2009 Dude I know where your coming from - im SUPER sensitive to vaso-active medications - but other stuff im fine with. You guys might be interested to know that supersensitivity to medications and hypersensitivity of alpha and beta receptors also occurs in a vareity of postural hypotension where NE levels are almost non existent. So us POTSIEs are not alone. However, many people here have been hugely helped by these medications. Definately try them. meds have rarely helped me and at times have made me feel worse. Quote Link to comment Share on other sites More sharing options...
tilly Posted July 9, 2009 Report Share Posted July 9, 2009 I thought it was just me feeling this way ... i have had bad reactions and i am also sencitive to medications even at small doses ... I was given bb and when they did nothing the dose was increased, this sent my heart fast and irregular the pharmcist said this was not a good sign it was so hard to get off them ...... i am terrified now to try anything else at all ..... which is not good eighter because i know that like you are saying that medicines where discovered and help so so many people (and they do) ....... I am also sencitive to antiinflamatory medications they cause me to get hives type of rash allover my body and others have bought me out in what is commonly termed a drug rash .... I have also suffered with arthritis all of my life and have had to get by with coping strategies, i suffer pain to varying degrees every single day .... I think there are just some of us more sencitive than others, it must be in our make up ......but i have always felt like it is just me frightened of the medications ....... i Am currently having the dilema of taking statins as they are clearly making my arthritis an muscle problems worse and at present time i am being asked to try the antiarrythmic drug verapamil and these are contraindicated with the statins .... and i sit here not knowing what to do ..... tilly Quote Link to comment Share on other sites More sharing options...
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