Study Shows That Pots Patients Have A Better Prognosis When Treated With Beta Blockers

[ramakentesh]

[futurehope]

I did not feel I learned anything because:

1) I'm not a teenager - he seemed to be referring to them a lot

2) I haven't improved - according to him I certainly could have

3) beta blockers made me feel worse and headed me towards depression

4) he said exercise helps - well maybe a bit but I still have POTS all day every day

Where are all the "improved" people? Unless by improved he means they now understand they have something wrong with them and it's not in their head. I've seen people on here for years.

I suspect he's talking about a subset of POTS patients that improve on beta blockers. I am really getting tired of doctors saying we're supposed to improve when they know NOTHING. Well, maybe they know a little about this condition, but not enough for my liking.

I'm sorry I did not have the patience to appreciate this doctor's efforts. Are you on beta blockers and are you getting better? What is the doctor's definition for saying someone is better anyway?

Anyhow, it's bedtime for me. Thanks, but this doctor's ideas were not for me.

[ramakentesh]

LOL - yeah i know where your coming from. Mine tends to wax and wane but i cant say that beta blockers had any role in that - ive only ever taken then recently anyway.

It doesnt really make sense that any patients other than those with the auto immune variety would get better - as some autoimmune illnesses can go into remission spotaneously but i think its usually a pretty small % of each type. If some of the other mechanisms proposed for POTS are correct then chances are it should stay the same.

I just thought Id post it to see if anyone was interested.

[mae]

Hi,

I'd like to know what study? We are all spread out all of the U.S and other countries with this mysterious problem and our doctors surely are not communicating amoungst each other. To get to the supposed Best doctors at MAYO you need money!!!!! And I was actually given a price of $3,000 for a consultation and a few blood tests ohhh yeah and a follow-up.

Based on this video THE BEST IS CLUELESS I have a better chance with this website and hoping and praying that I'll magically improve. Or I'll be one of the ones that let them experiment on me yeah right, I think we have to get together and find out what we really have in common and maybe we may get the cause of this...You know I just read this happens to "mostly white women" maybe it is one of those government experiment that just went wrong, probally some toxin that we so happen to be exposed to and it all a BIG MYSTERY NOW. Why are we having such a hard time getting proper medical treatment in the 1st place I mean most of us went years with these symptoms right and after going to doctor after doctor not one thought Hmm let me see what your VITALS are when you stand . If this condition is such a mystery why not have one clinic ASK us questions and do the testing, and also its probally gonna get better with lots of water exercise, and time SOUNDS LIKE TOXINS TO ME??????Ok I'll stop before everyone thinks I have totally lost my mind.

Mae

[ramakentesh]

Yeah its a little confusing. All teh doctors ive spoken to seem to have very different views on it. And one even told me what he thought the cause was, and why some medications arent really that helpfyul, then told me to take those same medications.

[MightyMouse]

I do VERY poorly on beta blockers--my tachycardia is FUNCTIONAL. That is, my heart rate speeds up as my blood pressure drops--and that speeding keeps me from passing out. With a beta blocker, it puts the brakes on my heart's ability to go fast enough to keep me conscious when upright.

Nina

[Guest tearose]

As stated in Nina's post, I also did very terribly on BB!!!

It lowered my bp and I had severe heart cramp-pains!

I need the faster heart rate to get the blood to brain and vital organs. It is the body/brains/heart normal response to an abnormal condition.

The abnormal condition which is understood as the physical challenges of baroreceptor reflex failure.

tearose

[pearsjon]

mae, a person who thinks like me. how wonderful. i second everythign you said and don't believe you are that far off. cause if all of this is vitamin defficiency and auto immune related then they really do know the cuses and are not testing for them. why wouldn;t they? along w/ let's stand and take your vitals how about lets test your vitamin levels and see if they are wacky. there is no money in it for the docs as far as vitamins go. no rx needed, even though they were throwing that around for a few years. you can't tell me that if docs want to make vitamins an rx that they don;t know why or when they should be tested and the what for.

ditto ,mae, i don't think your nuts. just more open minded.

[mrsdavidson8605]

ugh this is so annoying to me that the general idea is that people with "POTS" are teenagers who need a beta blocker and are fine after a few years! OMG that is the total opposite of me and several others on here!!! GRRRRR!!!! I get mad just thinking about it. I think a lot of these doctors are not out for the best interest of the patients, but out to get their name out there in hopes of being the one who "finds" the cure if ya know what i mean..

[morgan617]

I would like to say there are some people who have gotten better and left the site, because their lives are back on track. Unfortunately, they are not the majority, and I'm not sure any of them could ever really tell you the why's or how's of what did actually make them better. If I got rid of this stuff, I'd miss you all, but I wouldn't be here, I'd be out living.

When I got the ablation on my heart, it about killed me off, because that was the only thing helping me too, but I have changed or evolved or something. I have to have betas, because my BP goes sky high, it doesn't drop. I am tachy all the time without betas, but the betas also exacerbate huge drops in my heart rate, so now I'm stuck with a pacer too. My problem has never been a fast heart rate that helps keep my pressure up, but a really high bp and heart rate together.

As far as recovery, it's been thrown around for a long time that teenage girls that develop this at puberty have the highest success rate for recovery, so it would have been sort of a no brainer for anyone versed in pots. This is NOT to say all young women get better, so no misinterpretations, eh?

We all get tired of this I think, the cure is always right around the next corner...if only. morgan

[summer]

I guess Dr. Fischer is talking about teenagers because he is a pediatrician. If what I read is correct, many teenagers will outgrow POTS so it's hard to know if the improvement he is seeing is because of the BB, or just natural improvement that is expected for most teens anyway.

I guess the prognosis is not as good for us "old folks". I do feel better with a BB than without, but it's no cure that's for sure!! I have to take Florinef with it to keep my BP from going too low.

[MomtoGiuliana]

This guy is not a scientist/researcher?he?s a practitioner?and I agree that he may be perceiving a correlation as a causation. There is no research I have seen that shows that bb brings about long term relief. My specialist told me bb's work best in POTS patients who are experiencing tachycardia without low bp. Patients with low bp do poorly on them w/o using another medication to raise bp.

[maggie]

I looked at this utube site and watch the video of the dr from mayo. My question is while on this site I also saw a video with a picture of a little baby and I believe it was from this site dinet. Now when I went back to the site I can't find the video that I first saw. I was so impressed with it that it brought tears to my eyes. I would like to view this again, but can't find it. Please help!

maggie

[MelissaCrystal]

I went off beta blockers because while they did make me feel better in the first 6 months, I started to go downhill right afterwards and have too many issues with the side-effects.

[ramakentesh]

Hi guys

here is the study that this guy is referring to - of interest is the fact that its based on what the patients say their outcome is not from any actual functional testing (although in my experience id believe the patient's opinion the most because they are the one who actually have the illness!)

http://www.ncbi.nlm.nih.gov/pubmed/19170913

It could just be that some patients had better outcomes because they didnt have lower BP that warranted midodrine?

BBs for me are interesting. When I get super hyper symptoms I have to take them because otherwise its a nightmare, but if I do I find that a few hours down the track the lightheaded/dizzy feeling on standing can be worse rather than better and this is when my BP is actually within normal parameters 130/70. When i feel well with pots its usually at 140/80.

if im symptomatic in bed then BBs are ok - if im symptomatic in the morning and I take one I can really struggle with dizziness for the rest of the day.

[blackford]

I have been on atenolol for 25 years and could not get by without it. I have hyperadrenergic dysautonomia, likely caused by ineffective reuptake of noradrenaline, particularly in my heart and brain. Before taking this beta blocker, I had a rapid heart beat and hypertension, and severe exhaustion after athletic activity and intense studying in school and other forms of stress.

I was originally diagnosed as having mitral valve prolapse syndrome, and there may be a blood volume issue going on as well. Having read a variety of forums and sites about dysautonomia, I realize there are many different forms with different symptoms and causes. For example, those with hypotension symptoms are likely to feel worse with beta blockers and will need other meds. Sure enough, the atenolol often leaves me tired and fatigued due to a much slower heart rate, but the alternative was not tolerable. I am now in my fifties and know I will have medication issues going forward. Although I post here infrequently, I read regularly, and I am always impressed with how much grit and determination the folks here have.

[iheartcats]

I recently started a BB, Inderal, and am now taking it twice daily at 20mg. This is a very low dose, per my doctor, but we want the lowest dose that works.

I'm still fatigued, but more able to do activities. I was worried about my BP getting too low so I'm still on Midodrine (10mg AM, 5mg Lunch, 5mg PM if needed). It sounds a bit crazy to treat the tachy with a BB and BP with Midodrine, but it IS helping. I know from others this is not unheard of in the POTS world.

I guess at this point I have to accept being able to function better, and the BB seems to be helping me do that. My rate would get crazy standing, 140 and could go to 170s and 180s walking on stairs. I got tired of walking around with a rate of 130-150. BBs seem to knock it to 90-115 which is much more tolerable.

I think with Midodrine I'm still getting enough circulation.

I too hope for a cure/healing. If there's something wrong with receptors, there might be a chance they can eventually heal. One can hope!

[ramakentesh]

Hey Robert. When you say that you have hyperadrenergic dysautonomia likely to be caused by impaired norepinephrine reuptake I was just wondering where you got that information?

regards

[jayje]

maggie: i think this may be the link you were looking for

cute little kid included

[bjt22]

feel sort of late to this game and missing half the discussion, but a beta blocker works for me because in addition to the tachycardia, I tend to have blood pressures that can either be sky high or bottom of the charts low. No much in between. Beta blockers do help keep this a little more in check. I still remain very low most of the time, but a low that hasn't just dropped from a sky high feels much better. I also feel better not having my beating at 160-180 bpm everytime I stand up, and I'm sure not having a resting heart rate of 120 bpm is better for me in the long run, too.

That said, I could not tolerate atenolol. The drug from **** for me. I also need other drugs in addition to the beta blocker, and while these drugs make me feel better, they don't make me "well". At this point, though, if something can make me feel just five or ten percent better, that's ok by me. I'm so past looking for a magic bullet cure.

[all4family]

Hi,

I'd like to know what study? We are all spread out all of the U.S and other countries with this mysterious problem and our doctors surely are not communicating amoungst each other. To get to the supposed Best doctors at MAYO you need money!!!!! And I was actually given a price of $3,000 for a consultation and a few blood tests ohhh yeah and a follow-up.

Based on this video THE BEST IS CLUELESS I have a better chance with this website and hoping and praying that I'll magically improve. Or I'll be one of the ones that let them experiment on me yeah right, I think we have to get together and find out what we really have in common and maybe we may get the cause of this...You know I just read this happens to "mostly white women" maybe it is one of those government experiment that just went wrong, probally some toxin that we so happen to be exposed to and it all a BIG MYSTERY NOW. Why are we having such a hard time getting proper medical treatment in the 1st place I mean most of us went years with these symptoms right and after going to doctor after doctor not one thought Hmm let me see what your VITALS are when you stand . If this condition is such a mystery why not have one clinic ASK us questions and do the testing, and also its probally gonna get better with lots of water exercise, and time SOUNDS LIKE TOXINS TO ME??????Ok I'll stop before everyone thinks I have totally lost my mind.

Mae

May I say THANK YOU MAE!!!! I just watched a very sad movie called "Lorenzo's Oil" has any one else seen it? It is a true story about a boy who got ALD, and his brave parents who went against the system to find a cure for a rare disease. If you can watch it it is really good, but have a box of tissues. I watched it on my computer on netflix. With diseases like ours that no one is really rushing to find a "cure" to the best thing people can do sometimes is to share their stories, and that gives us all a common ground. Then maybe someday someone will say hey...this just might work. As far as toxins go, sounds just about right to me.

Suzy

[Maxine]

I've been on beta blockers for 19 years, and can't get off them, as they help a lot with tachycardia. I do also get really low BP, but the beta blockers don't seem to make a difference on BP swings. When I had my cardiac loop recorder removed my BP spiked to 168/110, and I only had carbocaine local anesthetic to numb the area--NO EPI either. I think people with NCS have a difficult time with BBs------more so then POTS patients. People with POTS seem to have much more tachycardia issues.

I think this man is only half right------------- if that. It does help some people by easing the tachycardia, tremors, hyper adrengic spells, and it enables them to get out and do more. However, I think it's much more complicated then that, and they still have to deal with many of the other symptoms like fatigue, digestive problems, endocrine complications, blood pooling ect. POTs can be secondary to other conditions. At any rate, I think all they can do is try to manage symptoms, and if the ANS decides to get better it will on it's own. They need to find the cause, and fix it.

He makes it sound like a relatively benign condition. This guy is from Mayo?

Maxine :0)

[iheartcats]

I still find it odd he doesn't mention Midodrine and BB together as a treatment, it's not one or the other always.

My BP varies a lot, but tends to be anywhere from 90/60 to 135/90 (so not so horrible, in the grand scheme of things) but I take Midodrine or it will get a bit too low for me.

[toddm1960]

Jumping in with my two cents.......I have orthostatic hypertention, I just took my standing BP and HR 121/102 & 136. I have tried beta blockers and alpha agonist and they both turn my regular exhuastion into bone crushing non functioning exhuastion. I'm a normal flow, splanchnic pooler and had really hoped the bb would help, but like most of us on here nothing seems to do much for us. Still in all, it's nice to hear all of the differences within our group.

[ramakentesh]

Betas for me get rid of most of the symptoms of sympathetic excess, but not the dizziness. This could be because it lowers the blood pressure, but it could also be because it leaves the alpha stimulation unapposed and increases the vasoconstriction.

The hypertensive response to standing (which I also have) could be the result of excessive norepinephrine from faulty reuptake which would mean that a combined alpha/beta blocker would be required. However, it could be an adaptive response to relative hypovolumia.

BTW - my standing BP at the moment is 148.