akavella

i sure hope it works for me also. glad to hear it works well for you...i am hoping i have no side effects from it...i was not able to tolerate florinef...

i have been having severe nausea, and persistent vomiting when my blood pressure drops...does anyone else have this problem? i also am nauseated pretty much everyday. this is all really frustrating and each day it seems there is a new problem. ughhhhhhhhhhhhhhhhh

okay so i have been on midodrine 15mg, 15mg, then 10mg with no luck with raising my bp. avg bp 70-85/40-50. has anyone had any luck with this medicine and did you have any sideeffects? he is going to be staring me on 60mg TID....

thanks

wow 20 for a heart rate. i would drop to the floor. i started this med and my hr dropped to 40 and i thought i was dying. i am glad this medicine is working for you...the only thing it did help me with, is lessening my tremors.

i know that feeling of fuzziness you are talking about. being a difficult patient that i am, i had the medicine changed from inderal la 60mg to propranolol. i only took half the dose to start (10mg instead of 20mg), with that said my heart rate dropped to 40, i was severely short of breath and felt as if someone was sitting on my chest (only when my hr was in the 40's). not a great feeling. my first dose was at about 3pm, due to pharmacy issues, i was so afraid so my husband he me setting my alarm to check m bp and hr. lol. so the next day i had to work and took the dose at 630 am. i am a registered nurse, and have always been on my toes, and on top of my game...and let me tell you, i felt almost as if i was intoxicated, and not able to think clearly and was more symptomatic, still with a low hr and bp. i informed my md, and he said good thing i didnt take the full 20mg twice a day, and changed it to 10mg once a day.

the next day i again i had a horrible day on 10mg so i called my doctor back and he said to try 5mg once a day...i have yet to try it because i have been working and i feel it is not a good thing to experiment with while i have others lives in my hands..

all in all... i dont think i am a big fan so far of propranolol. and honestly i think if anything maybe i can just take 5mg prn when my hr is consistently over 100. not in the 70's. (at my apt my hr was 160, thus the starting of this med)

I thought I'd found my miracle drug with this one - but after a few weeks - I started having rebound hypertension. I couldn't take it the multiple times during the day because when I lie down my bp goes really low - so couldn't do the afternoon dose. Then the bp started rising and got really high. I was sad that it didn't work long term for me. It has leveled out now - but it took awhile for the high bp's to level out after stopping the med.

i also couldnt do the afternoon dose. so sorry that you had rebound HTN. im glad your bp is leveled out now.

@cat_lady

thank you. i actually have an apt with my OBGYN and he is also high risk OBGYN.

This has been one of the best drugs for me; I've taken it for the last three years. I am only on 20 mg, once a day though. There was a recent Vanderbilt article on "Less is more" stating that the lower dose is more effective for POTS HR issues. If I am supine, my BP is usually 90/50, but it increases greatly with standing. I would probably start with 10 mg and work up from there. It may not take much to bring your HR down, and a smaller dose is easier to counteract if you needed to.

thank you...just called and got some parameters cause i am still uneasy and my specialists NP said maybe propranolol 10 or 20mg would be better bid or tid, so i am waiting for a phone call back. so far she said to not take it if its sbp is under 90...as a nurse i know that for sure but i am more comfortable with not taking it when sbp is under 100. fingers are crossed.

My daughter takes Propranolol 120 ER and has for about a year and a half. She started on a lower dose, but it did not work enough for her. Her current doctor tried to switch to another med, but it did not help enough and we switched back. This has been the best med so far for her. She has gained weight on it, but she needed to. She was 117 lbs at 5 feet 11. She is now about 137 and still is thin, but looks good. It is the only med that continues to work for her.

thank you. i am glad this medicine is working for your daughter. i am hoping to have some luck.

okay...im still scared, but i am gonna try it today and i guess see what happens. i am not on florinef just midodrine. what does of midodrine are you on? i am on 15mg, 15mg, 10mg.

do you notice a drop in your bp with the regular propranolol as opposed to the long acting...or no change?

also has anyone taken this while they were pregnant. i am trying to get pregnant right now and that is another concern, and i forgot to ask my specialist when i was there on monday (darn memory)

mine is the long acting. so i am not sure the amount that i will get at one time...did you gain any weight with it.

thanks. 60mg is the lowest for the long acting. his reasoning for the long acting is i wont get a large dose at one time.

My doctor originally prescribed me this a few months ago, and I never started because of low bp 70/40. Sine an increase in midodrine 15mg BID and 10mg for my third dose, he wants me to start it due to a hr of 145-160 at my doctor apt. I am scared to death to start this. It is inderal la 60mg.

Anyone been on this medicine...has it helped, how much did it lower your bp? what were your side effects? what dose were you on? did you gain any weight on this medicine?

i wrote her back in sept 2010 and the drs show and doctor oz. no response. i will do this again though

I dont seem to have this problem of pain while intercourse. I know there may be a lack of interest at times, but for the most part it is okay. I attribute the lack of interest to no energy and being tired. I must say though, since I started wellbutrin XL I have had much more desire. I joke with my friends that it is my viagra pill.

I don't understand the giving of NTG at 8 minutes to speed up the test. He saves 12 minutes? That is soo artificial to give ntg. I would think that a non-pots given ntg sl would drop their pressure and pass out. Ntg does not create a natural physiologic state. Your symptoms and history all sound dysautonomic. I don't know, ntg doesn't make sense to me.

i agree, most use isuprel not nirto, and i feel if you were already passing out nitro was not a good choice. isuprel speeds up the heart rate and does not slow it down or cause hypotension. maybe you should ask to have repeated without nitro if your diagnosis is still in question. you may not need medications if you have had multiple syncopal episodes. i also think your sx sound like a form of dysautonomia.

I do not have tremors, thankfully. My memory is terrible these days. I have always been a perfectionist in regards to grammar and speech. Now, my husband just laughs when I say something like, "the food room" instead of "kitchen." I make sticky notes as reminders, but forget to look at them too!! LOL

ya that is me too. or i will say words backwards, or slur them like im intoxicated or something. it is so annoying. i make notes as well, but like you forget that i made them.

oh man i hope they dont do that to me. lol. do you have tremors, and if so are they severe? what about memory probs..

I am a newbie to this site, and have found so much helpful information. Two weeks ago, I met with the Director of Electrophysiology at Emory to discuss my medical issues. He confirmed I do have an autonomic dysfunction based on my symptoms and previous tests, and then ordered a tilt table test. I have a copy of my report and would like to share it and get some input from you guys:

Baseline HR 75, Baseline BP 122/67

HR at termination 147, BP at termination 78/41

At 8 minutes, they gave me 0.4 mg Nitro SL, and at 9 minutes (before the Nitro even melted under my tongue), I fainted while the physician was talking to me about his wife (she also has POTS). The actual results on the test state, "The patient was syncopal with sinus tachycardia and hypotension, consistent with neurogenic syncope with a primary vasodepressor response." At this point, I know I have an autonomic problem, but I am not sure if it is NMH or POTS. He did not really specify. Your thoughts?!?

My symptoms include: syncope daily; fatigue from doing nothing; get lightheaded if I stand longer than 5-6 minutes; extreme weakness after shower, toileting; throbbing head (feels like nerve jumping)/migraines; can’t sleep – feel restless or like something is wrong; foggy headed; tingling/numbness; sometimes I feel disassociated from the environment. I am wearing a heart monitor just so I can learn what my heart is doing - sitting HR is 70, standing for 3 minutes is 120, walking around for 6 minutes is 160-170.

I am a Registered Nurse, but this is all completely new for me. I spent 5 years battling major stomach issues and anemia (doctor thought this was the reason for occasional fainting). I had a Nissen Fundoplication and gallbladder removal two years ago. My syncope became more frequent after the surgeries. Perhaps my stomach issues were just a symptom of AD the whole time....

I am already on Florinef 0.2 mg AM and 0.1 mg PM, and they added Norpace CR 100 mg twice a day. Thus far, I have passed out every day for 85 days except for 2 days. I had to quit my job Thanksgiving weekend because I am so weak and foggy headed. Plus, it would not be good for me to pass out on a patient while performing my nursing duties. I am stuck at home all day and unable to drive. I have always been active and hyper, now I feel like a prisoner to my health.

i am curious...did they give you the nitro when your bp was 120's and then later you fainted? hypotension is a frequent side effect of nitro and if your bp was normal or on the low side it may have caused it to drop more, then caused the syncaple episode. there is no doubt that you have POTS in my mind but i would question NMH due to the fact that nitro was given. what was the reasoning? were you having chest pain?

i am having an eeg and emg on thursday, and i am wondering if any of you POTS people have had one. i have seen them done in the hospital, but i am curious what your results were and your experience with it...

My hubby and I tried for over a year. I was 35 at the time, so that may have played a part. Then we saw the best fertility doc in our city. All of our tests were totally normal. We used the doctor for 4 months of treatment but still were unsuccessful. We have no reason for why we didn't conceive, except my PCP said it was probably because of the stress my body was already under due to POTS/SFN. Feel free to PM me for more info.

how do i send a PM?

I had 2 children in my mid twenties but several miscarriages after that and then an inability to get pregnant. Mine was caused by high anti-cardio lipin.

Janie

how do they test for anti-cardio lipin?

I'm another life-long POTSy. I had no problem conceiving my two kids, but both were conceived within three weeks of stopping the pill. Looking back at my past erratic cycles and my current hormone studies, it is possible that the pill was the only thing that made conception possible. My OB/GYN and Endocrinologist believe that I have not ovulated in the last six years since ending the BC pills.

i have never been on BC, maybe i am not ovulating regularly. i have had one miscarriage.

I did not have trouble conceiving when we tried (I was age 33 at the time). Have you had your thyroid checked. Even slightly off thyroid levels can impact fertility. Anyway, as you say you need full evaluation by a specialist. Best wishes!

thyroid levels are all normal. and thank you