IDreamInColor Posted October 9, 2011 Report Posted October 9, 2011 Hello everyone in the potsie world, my name is Lori, I am 45 yrs old, married 27 years with 3 adult kids. I was just diagnosed with dystautonomia last month, but I suspect I've had this affliction for a very long time. I spent the entire summer slowly declining and getting sicker and sicker, long story short I ended up in the ER with a 5 day stay in the hospital. I was released from the hosp Sept 13 but I'm still not doing very well. While at the hospital the doc started me on paxil 10 mg daily, and florinef. I just had a follow up appt last thursday and my blood pressure was too high 160/100, so he decided to take me off the florinef and start me on proamatine. I stopped taking the florinef last thursday, but have not begun the proamatine yet.Here is my question...my blood pressure is still a bit high even after being off the florinef since thursday. I googled proamatine and I see that it is used to raise the blood pressure. So now I'm afraid to take the proamatine for fear of raising my blood pressure even more.My blood pressure was running very low like 70's over 40's during the summer, and while I was in the hospital, but since then it has been running high. I am so confused on what to do about this medication. I mean, why would my doctor prescribe it 5 minutes after taking my blood pressure that was 160/100?Currently my main symptoms are constant strange feeling in my head, like I'm one false move away from vertigo all the time, also nausea, and my legs jerking uncontrollably, and tremors in my arms and upper body. Also experiencing flushing up my back and neck and into my head. I'm having many many more symptoms, but those are the most bothersome right now. Quote
lieze Posted October 10, 2011 Report Posted October 10, 2011 I would call and report your blood pressure and ask what they want you to do.I agree that you don't want your blood pressure to go higher but I really don't know what this medication does or how it works so I think it would be better to ask in case it would be something that would help.Maybe it just takes a while for the fllorinef to get out of your system. Quote
Katybug Posted October 10, 2011 Report Posted October 10, 2011 Hi! Welcome to the Forum and sorry you need to be here. I am not specifically familiar with proamitine but different meds have different mechanisms so your doc may think this will work differently for you. The Florinef should have forced your BP up by increasing your blood volume. I was treated once with Verapimil (a BP lowering med, calcium channel blocker) for my migraines even though I had low BP. My doc monitored my BP and it was not affected at all but it helped the headaches. Maybe your doc is hoping for this kind of situation.That being said, I agree with Lieze, you should call your doc and tell him your current BP and inquire about why he wants you to use this particular med and what he hopes to accomplish with it. As a new POTSie, I actually encourage you to ask your docs as many questions as possible as this is a complicated disorder to treat and just when you think you get it, you'll have more questions. Glad you found the forum. I have been diagnosed since Feb. of this year but have been searching for a diagnosis for 4 yrs. This forum has been a great resource and also an inexplicable support on the bad days.Katie Quote
sandymbme Posted October 11, 2011 Report Posted October 11, 2011 Proamitine is a really common med given to us POTSies. (Also known in it's generic form as midodrine) It is a drug I have taken at various doses for years. The main advantage over the florinef is two-fold, really. The proamitine is really short acting, meaning it is out of your bloodsteam completely within a few hours. Florinef builds up and stays at the same level, and you have to titrate off of the drug. The proamitine also has all different doses. So your doctor can change your dosage really rapidly to respond to exactly how your blood pressure is doing right at that very moment, altering it up or down, or withholding it entirely depending on how your blood pressure is doing. As others have said, I am so sorry you have the reason to find us, but very glad you found your way here. A word of advice, you are going to find that in managing your illness you are going to have to work very closely with your doctor. If you do not feel comfortable voicing your concerns or questions to your doctor, ask for a referral. Good communication is key to staying as healthy as possible!Sandy Quote
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