Propranolol

[lavender]

My doctor gave me an Rx for Propranolol, 10 mg, to try. I havn't been diagnosed with any kind of dysaut at this point. I explained to him the changes I notice in my heartrate and BP when standing. He said to try the beta blocker, see what it does and we'll look into the possability of something autonomic.

So anyway, my rx just says, "take as needed." This isn't real helpful! from reading it sounds like everyone here responds to this med differently. Have you found that there is a better time of day to take it than others? Is it short acting or long acting? do you think 10mg is a good dose to try starting on?

Thanks! Wanted to run this by you before I give it a try.

[bttrflyamby1981]

I was given Propranolol to treat migraines. I did not tolerate it well so was taken off of it. Good luck!

[Maxine]

I've been on it for 16 years-----20 mgs. 3 times a day. Sometimes I still have break through tachycardia, but I have not had any bad reactions to the durg. I did gain about 10 pounds several months after taking it.

I can't go off my beta blockers----I have tried, and I always get the tachycardia back----big time thumping, and terrible tremors.

Maxine :0)

[Sophia3]

I have used 10 mg sometimes as needed for years. No problem.

Truly, you should be asking your DOC these questions as he prescribed them to you..you should KNOW how long it lasts. Meds should be explained and if not, ASK.

[Gena]

I take a half or 3/4 of 10 mg propolanol as needed, which is a few times a month. It really helps me with my arrhythmias.

Gena

[Ernie]

Hi,

I take 10 mg, every 4 hours. No side effect.

[marnian]

I take 10mg twice a day. Once in the morning and then again in the afternoon/evening when I begin feeling tachy again. I've taken as much as 20mg 4 times a day, but it made me faint even though I felt better when I wasn't fainting.

[Tessa]

I am taking a different Beta Blocker: Atenolol.

12,5 mg in the morning and 12,5 mg in the evening

My pulse is perfect since I?ve started with it (around 60 or 65 bpm).

My blood pressure has always been low and as it seems lower sometimes, I just try to add more salt to my diet and drink plenty of water or Aquarius (Gatorade).

Tessa

[masumeh]

Not familiar with this medication. But, I would generally be wary of doctors who prescribe medication w/out any diagnosis! I encountered a lot of those when I first had POTS...I always went and bought the drug, (my drawer became a virtual pharmacy), but I never actually took any of it because I was like, "Hey, this doc doesn't even know what the heck I have, and he's so eager to chalk me up with drugs?" Just my personal opinion.

To diagnose you properly, you should be off medication, so they can see your baseline reaction to the tilt table test, the stress test, EKG, ECG. If your doctor did not run these tests on you, I would find another doctor. You can use the directory "Physician List" on this website to find a doctor who understands dysautonomia. Getting a diagnosis is really important...for a lot of reasons, sanity being one of them.

[dizzygirl]

last year(2005) i was up to the max dose (if im thinking of the right med) but i was taking 90mg 4 times a day of propranolol..(360 mg a day)

um the only side effect that really stands out for me at the moment is that it made me quite tired... when i first began taking it helped more then any bb that ive been on to that point..

hope that it helps you....good luck

[corina]

when i started a (different) bb i felt soooo much better but after about 10 days it helped less and less and less and . . . my cardio told me to up the doses and i immediately felt better again but after about 10 days it helped less and less . . . to make a long story short, i am on a high dose now because i can't do without. it very much helps to fight arrythmia's. unfortunately, i've never felt so well as when i first started the bb's.

corina

[Tessa]

Not familiar with this medication. But, I would generally be wary of doctors who prescribe medication w/out any diagnosis! I encountered a lot of those when I first had POTS...I always went and bought the drug, (my drawer became a virtual pharmacy), but I never actually took any of it because I was like, "Hey, this doc doesn't even know what the heck I have, and he's so eager to chalk me up with drugs?" Just my personal opinion.

To diagnose you properly, you should be off medication, so they can see your baseline reaction to the tilt table test, the stress test, EKG, ECG. If your doctor did not run these tests on you, I would find another doctor. You can use the directory "Physician List" on this website to find a doctor who understands dysautonomia. Getting a diagnosis is really important...for a lot of reasons, sanity being one of them.

Hi Masumeh

You are right, one should be wary of doctors who prescribe medication without a diagnosis. I have no diagnosis yet. No TTT test done. EKG and ECG are perfect. My pulse was too high and my Blood pressure low.

I have most of the symptoms of POTS and talking with the cardiologist about it and after he checked my pulse, he decided to prescribe the beta blocker meanwhile I get a cardiologist who knows more about POTS.

It is the first time in more than a year that I am starting feeling better, thanks to the beta blocker my pulse has gone down to 60 bmp.

Even though, I know I have to be off medication when doing all the tests. Thank you for mentioning it. I think it is important to point it out, because many doctors say there is no reason to stop medication, but it is not true I did not know years ago and I am sure it can help others.

Although I have been lucky with the doctor?s prescription, I have to admit that there were many chances of an error and would like to recommend people to be sure of what they take... Getting a diagnosis is very important...

I am still looking for a cardiologist, where I live, who knows about POTS ... I just hope to find one soon.

Love,

Tessa

[lavender]

So, I've been taking Propranolol for a couple weeks. (not every day) It seems to make my orthostatic heartrate and BP a bit more "normal" but I'm not sure it makes me feel any better. Does propran cause headaches and more fatigue for anyone? What about weakness? I think it's causing headaches for me as it wears off. I've been SO up and down physically lately, that it is hard for me to tell what the med is doing....good or bad....and what is just me feeling sick. Is it possible to over time get used the the Propran and not have side affects?

[deucykub]

Hi, Lavender:

Masumeh is right on the mark. It sounds like your doctor is prescribing you medication without knowing what is specifically wrong. The doctor that figured out I had POTS is not my treating doctor for POTS. He actually said to me that all he could do is try to research and learn more about it, following in the footsteps of those who really understand it, and treat through trial and error. He sent me to see the Harvard Medical School autonomic neurologists at Beth Isreal Deaconess Medical Center in Boston, MA (about 2.5 hours away).

All this to say, a good doctor knows when to send you to a more experienced or specialized doctor. If your doctor isn't doing that, sometimes being assertive can help (if you need a referral).

(I used to be really cowed by doctors, never demanding the help I really needed. It was only with this last doctor - after a year and a half of feeling sick - that I said, "Of all the doctors I'm seeing right now, which is quite a few, you seem to listen the most and be the most compassionate. I really need help. Everyone is focusing on their specialty. No one is tying all my symptoms together, and I am really confused!" To my surprise and delight, he really listened, gave me a VERY thorough exam, head to toe, followed up with lots of testing, took the lead, and finally figured out POTS.)

Doctors sometimes need to understand that when you aren't feeling well, you don't want trial and error, you want to feel BETTER, FAST! If you don't need a referral, you might consider going to a specialist without your doctor sending you (although, you can call and let the doc know your plans as a courtesy).

Where are you located? Perhaps one of the forum members can recommend a knowledgable doctor for you!

I hope you feel better very soon!

[dawn]

Hi,

I have taken propranolol 10mg 3-4 times a day for many years. I did try toprol first but blacked out.

The good thing about propranolol is it crosses the blood brain barrier so it helps with anxiety too. I have never had any problems. If I am having a rough time (tachy wise) I just pop an extra one. It is nice cuz it is short acting.

Dawn

I just read your post about the fatigue. All beta blockers make you tired but your body does adjust to them. You also lose your sex drive usually.

Alot of people take a dose of propranolol before they have to do something stressful, it calms down the autonomic system. I have heard of alot of people who take it before giving a public speech.

Dawn

[lavender]

I really appreciate all of your help and your listening. Yes it is true that my doctors at this point are mostly just doing trial and error with different meds. It's really frustrating, but after years of just not knowing what is really wrong, i think they are not sure what else to do. They say that over the years that either my illness will evolve and it will become more clear what it is, or it will just go away. (dont really think so!) I know I need a better doctor, but after 15 plus years or seeing doctor after doctor, and not getting very far, I guess I'm burned out and dont have much hope in anything different. They all run a bunch of tests then eventually tell me they don't know what it wrong or they diagnose me with something that eventually proves to be wrong. I live in alaska which makes my choice of doctors kind of limited. I've gone to bigger specialized hospitals in the lower 48 states 3 times. Each time I didn't get anywhere. It's hard. I come home so crushed. this illness has totally taken over my life and yet there is "nothing wrong!" I've worked with all sorts of different doctors in alaska. When I pressure my doctors here that I NEED more help and a more specialized doctor, they tell me they just aren't sure where to send me and that I need to patient! Luckely, they are finally surriously looking for doctor who may be of help. They know I need someone who will look beyond the usual and run beyond the usual tests. And someone who will look at the WHOLE picture. But they aren't sure who that should be and even what specialty. I am usually refurred to Rhuematolagist, I'm not sure if that is what I need though.

It's so hard for me at this point to be very pushy with them. I think after so many years of being SO sick but having so many test return normal, and some doctors telling me it is in my head, I struggle to feel like this is a valid illness, like it's worth bothering doctors with. Or that there is any hope in actually getting answers someday. I think I'm also afraid that if they do figure it out it will be an illness that isn't respected in the medical world. It's hard for me to not feel stupid going from doctor to doctor trying to explain how sick I feel, when they (mostly) can't see it and don't get it, or dont know what to do.

In learning about POTS there are some ways that it makes a lot of sense that it could be what is wrong but like other illnesses we've looked into there are things that just don't line up, so I guess I am hesitant to bring up yet another illness to my doctor that I want to be tested for. I also hate that when I go into my doctor and let them see how frustrated I am and get pushy about NEEDING answers, they put in my chart that I am depressed! I'm not depressed, just desperate and frustrated!!

Sorry this is long. I hate being at a loss as to what to do.

at this point I'm going to take a break from the BB for a little while. I'll probably try it again in a few weeks and keep documenting what is happening with my symptoms on and off of it, then I'll go talk to my doctor. He said he would be thinking about the possibility of my illness being autonimoc related. So we'll see if he puts though into it...... And maybe I'll talk to him about POTS......not sure yet!