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I am on my 3rd beta blocker. Toprol made my heart rate 40 all the time and I could not get out of bed. With Atenolol my blood pressure dropped and heart increased by 30 everytime I stood. I also believe after stopping it that it had worsened my anxiety and depression. Now I am on Nadolol first 10mg now 20mg.

On the upside it seems like I have less anxiety, my heart rate doesnt seem to get quite so high as it did on the atenolol. The downside since I have been on this I have diarrhea nearly everyday for hours. My insomnia is worse than ever. My sleep cycle is further out of whack...get to bed later...only with the help of other medications. Keep waking up. So I end up sleeping later. I am in bed several hours but still failing to get enough sleep or quality sleep. The medication initially made me so groggy, I felt I could barely move. Some of that is not as extreme now, but my level of functioning is half of what it was before I started this medication. I am nauseated all day. Also, since I have asthma and I am on advair and albuterol, my asthma has worsened. I am short of breath. Advair is working less, needing albuterol more. I see the cardiologist in 2 days. I don't know if I want to be on a beta blocker at all. Is there anyone else with input about side effects they had from beta blockers. Does anyone else manage to control NCS and POTS without a beta blocker. I am at my wit's end. I feel like my doctors don't listen. I feel like a guinea pig in a bad experience. I feel like all the medications have done is worsen the quality of my life with the side effects. I am scared and depressed about this. Any input would truly be appreciated beyond...beyond! Thanks! I am in Wisconsin. Does anyone have a doctor in my state that they would recommend?

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Hi.. I wanted to mention.. I have used albuterol in the past for breathing difficulties.. and albuterol can speed up your HR when you use.. that on top of an allready fast HR is not funny..

Um..I have been on all the meds that you mentioned.. including the breathing meds.. I dont remeber how the toprol and nadol affected.. all I remeber is that it didnt work for me.. and the atenolol I was on that about 3 yrs ago.. and it made my fatigue so much worse.. and I still was quite tachy..

In regards to advair.. can you get a stronger dose? and maybe it would help more? or maybe you need you astma meds changed..

Have you tried Nebulizer treatments? I found that that is what helps me most with breathing.. when I am badly flared.. that and there is a medication.. called the medrol pack.. I believe that it is a steriod?? I might be wrong on that.. but that helps with breathing too.. I have restrictive ling disease.. that was misdiagnosed for yrs as being astma..

I know what you mean about feeling like a guinea pig.. but I have to think that being a guinea pig now might help somebody in the future.. I know not alot of comfort right??

I hope that you start feeling better soon..

Linda

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I also have Asthma and chronic Bronchitis. The Pulmonary doc put me on Spiriva to try w/o my 50/500 advair. The Nodolol exhaust me by lowering my BP too. I just restarted it at 10 mg twice a day with my Lexapro in the PM. The 20 mg in the Pm knocked me on my butt. I do seem to be coughing up a lot more icky stuff now that I am on the Nadolol, but I did that before and the doc put me back on a allergy med that had pseudophedrine in it. Here Guinea pig, guinea pig... ;)

hope you get some relief soon!

Pam

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I could just never take betas. I think I've tried every med out there. We are guinea pigs for sure, but maybe we can help people in the future not have to be, who knows. They are notorious for fatigue and diarrhea though. Hope they find something. My deal with my doc is, I'll try something unless it makes me feel worse, then forget it. He says okay...morgan

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I'm with Morgan. If I feel worse than when I started, forget it. Of course that basically means that I feel bad fairly frequently. But I refuse to feel worse than I already do.

It can really be frustrating trying to live my handicapped life, though. I totally understand.

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I can relate!!!!

I've tried every bb out there, almost every calcium channel blocker. I too have asthama and the meds made this much worse.

I've gone for years not using meds (other than extra salt, lots of fluids, extra potassium and magnesium supplements) but I would keep on hand a few pills of Atenelol just in case I had severe tachycardia spells. I would have to take the med and then suffer the side effects.

The past few months we've tried something different and it's working really well for me. Most Dr's don't know this drug can be written this way but here is what I'm taking....

Metoprolol 1 MG/ML Suspension.

This is a medication that has to be made by a compounding pharmacy. I started out taking 1 cc every 4 hours (which is = to 1 mg), I am now taking 2 cc (2 mg's) every 6 hours and I often skip the last dose since it's bedtime and lying down my blood pressure will get too low.

My Dr's have been SHOCKED that this works for me. It is literally a dose they would give an infant if needed. It keeps my heart rate low some days I've chosen not to take it & I've done fine. On the flip side, If I'm having tachy of 150-180 I can take a dose and within an hr my heart rate will be much lower and manageable for me. It doesn't cure things but it seems to take the edge off without causing side effects and without bothering my breathing issues.

I don't think any of my Dr's would have suggested this had it not been for being in the hospital with a Dr desperate to help me find something and after hearing how sensitive to meds I was he felt this was worth a shot. I've since learned if I take infant doses of motrin or ANY other drug I "need" my body is able to tolerate it and BENEFIT from it (again, very unusual given most people would never benefit from such a tiny dose). I'm so thankful this Dr went out on a limb and it does help.

May be something you want to consider and talk with your Dr about.

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Dear Faithinspires,

I am in your shoes. I really need a beta blocker to control my fast heart. I also have asthma and nasal allergies.

I have had a very difficult time on all beta blockers but I now take one that works pretty well without side effects. I had to try a lot of them to get here.

My advice:

Keep a running list of every beta bocker you try and record all dosage amounts and side effects.

NEVER take a normal dose of a beta blocker to start on it. The side effects will kick in and you will believe you can't tolerate it. Start out with the lowest dose pill or capsule they make. Then take even less than that to begin with. Go LOW and SLOW.

First make sure that the drug is not in time-release form. If it is, you can't cut it or divide it. If it is not time-release then cut the pill into quarters or even eights. If you have a capsule, you can usually open it and pour some out. Take only a quarter or an eighth of the lowest dose for two weeks, then step up to the next level. As you move along, watch your symptoms--both the dysautonomia and the allergies. Whatever you do or whatever the doctor says, don't rush it. Stay ridicuoulsy LOW and SLOW.

In my case, my heart rate will tell me when I hit a theraputic dose of beta blocker. Then stop right there and stay there. You may be able to find a beta blocker that works at a low dose and does not have side effects at that dose. You want to find the lowest theraputic dose.

If you have too many side effects before reaching a theraputic dose, then try another beta blocker. There are a lot of them. I have tried about 16 different ones to find the one that works for me which is Sectral.

There's more I want to say to you.

When I started Sectral, I was prescribed a generic form. I took it and it worked. I refilled my prescription a few times and it was always the same generic. Then they gave me a different generic and it was like taking nothing at all...did not have any impact on my heart rate. Go figure. Yet another generic gave me an allergic reaction. Finally my doctor tired me on the name brand, Sectral. That worked. Now he always writes "dispense as written" on my prescription and then I have to go around with my health insurance and provide them with the complete list of beta blockers I have used, including the different brand and generic forms (another reason to stay current with that list).

It is worth the fight to stay on a drug that works for me.

Now, about those allergies. Beta blockers can actually cause asthma in a person with allergies. Some beta blockers constrict vessals and when they treat you for asthma, they are always trying to open them up! Yes, it seems we are stuck at cross purposes when we have both asthma and POTS.

I have worked with the same allergist for over 10 years to put together a program that works for my asthma. Allergists know that some beta blockers are worse than others for constricting vessels. Sectral is one of the better ones for a person with asthma. So let the allergist help you choose which beta blocker to try first.

Also make the allergist aware that you have dysautonomia (in my case, POTS) and you can't tolerate those asthma drugs that speed up the heart. There are some newer meds for asthma that I can take such as singulair. This one works by inhibiting leukatrines and does not work by vasodialation. That is a good thing for a person with POTS. I take claritin every morning and singulair every night. I also take Pulmicort, which is in the form of a tubuhaler. This means you inhale it by drawing breath instead of using a "puffer." The propellants in the puffers acutally cause me asthma!

The best meds for not messing with you heart rate are the preventative ones, not the rescue ones. I NEVER use rescue drugs for asthma. I suppose if I had to I would but the answer is to be on such a good maintainance program as to not need the rescue meds.

When you have both POTS and asthma, do not mess around with the notion that you don't want to take allergy medicine unless you need it. Practice maintainance.

Sorry if this is long and sounds like a lecture. I hope it is helpful. Also it is late and my spelling is going to the dogs. Woof! Woof!

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I have had almost the opposite reaction to beta blocker types, which shows how different we all are. I was on nadalol for years and it made me, if not depressed, then very down, anxious, and extremely tired. I was switched to atenolol and tolerated that much better. On both beta blockers I felt breathless from time to time and was told by various cardiologists that this was just a common side-effect of the medication (like that made me feel better!) Recently, my breathlessness has become much worse. A visit to my cardiologist this morning resulted in a reduction in my dosage of atenolol so we will see how it goes. I too was prescribed albuterol by my family doctor but did not take it as my cardiologist said that it would just increase my tachy episodes and probably make me feel MORE s.o.b. than less. She believes that the beta-blocker is the culprit, perhaps in combination with the florinef that I just started two months ago. As the florinef is keeping me upright, however, (far fewer dizzy attacks and no --fingers crossed--fainting) she would rather reduce my beta-blocker than take me off the florinef.

The bottom line is, everyone seems to react differently to these meds, which I know is certainly no comfort. I guess we all have to find what works specifically for us.

Anyway, good luck and my heart goes out to you. I too feel like a guinea pig. Shouldn't medical test subjects be compensated in some way?!!!

India

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I appreciate all of your replies so much! Interestingly, a couple of hours later my doctors nurse called me from her cell phone in her car. (Her and the doctor are with a group of electrophysiologist/cardiologists who travel to see patients at all hospitals over a 200 mile radius.) So she tells me she is calling because they need to cancel my appt. for wednesday and is wondering how I am doing. So I proceed to tell her how terribly I am doing...symptoms, side effects, level of functioning etc.

I reminded her of my reactions to the other 2 beta blockers and my chemical sensitivities to over a dozen meds. She tells me that she is parked at a stop sign and is quickly jotting this all down for the doctor. She then tells me he will not want me on this med due to the gastrointestinal problems because my electrolytes have to be pretty messed up by now. She also said that he will not want me on it with the increase in asthma symptoms and shortness of breath. But that I can't just stop the med without having adverse reactions. (The doctor only travels to my area once every 4 months.) Then she tells me that I should probably be in the hospital and once again that my only other option might be norpace, which of course they would have to give me in the hospital. Then she asks if I will be home tommorrow since its almost 5 and she will talk to the doctor and find out what he wants to do with me. She said he may suggest a hospital stay of 1-3 weeks at whichever hospital he is going to be at next to try to get things under control. But at any rate she will see where and when she can get me an appt with him and call me tommorrow.

As for Norpace, I am now as afraid of it as I am of the beta blockers. Aside from them making me sicker and further reducing my level of functioning, a few of my adverse reactions to meds were life threatening and by the grace of God I am here. I read alot about Norpace and the risks scare me, and that the side effects may keep me debilitated scares me.

I have also had 3 surgeries in the past year, gastroscopy/colonoscopy, laparoscopy, and then a hysterectomy. I had 2 sm polyps in my sm intest. and 1 lg polyp in my lg intest removed along with several biopsies, then I had a mass removed behind my ovary(by the grace of God, all of these biopsies were benign.)

The depo they gave me to try to control endometriosis depleted all of the estrogen in my system and then they put me on estradiol which caused a blood clot, so had to be stopped. So after 4 months of menstruation and pain, they did the hysterectomy leaving my 1 1/2 ovaries for estrogen.

Over the past year I have lost about 100 pounds, if I lose any more weight, they are concerned because I will be underweight.

It is so hard for me to accept being on ssi (barely getting by) and harder to accept how disabled I have become. I am a single mother, 35, with little support from others. So my goal still remains to become well enough to function as best I can despite my health problems. Best case scenario, the ability to work to improve our hopeless financial situation. I so desperately want as I am sure we all do to be on meds that help without side effects that further reduce my level of functioning. It makes the expression the cure is worse than the disease...ring true.

I will stop my rant now, as I know I have said much. I apologize that this is so long! My regards to all of you! I will update on what they say tommorrow. Thank you so much for listening.

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I think you are wise to be leary of Norpace. That is my only untried option as well. I have a really good cardio Dr who studied under Dr. Grubb and we all agree...there have been no significant # people who benefited from Norpace under these circumstances. So...while they are willing to try it if I want to they and all the Dr's I saw at Mayo were hesitant to go that route.

I decided for myself the drug was too risky in my case.

I have empathy for your situation. I am 37 and single and have no family to help and very limited income but because I'm single I fall through the cracks for most assistance. It's hard having to do everything on your own, arrange your own care and keep up with everything with no support etc. I know you get it in the shoes you're in.

Good luck and I hope you get some answers from the Dr. that will help you soon!

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The nurse finally called. She said that Dr. says to try taking 10mg Nadolol in am and 10mg at night, or cut back to 10mg and see if this improves my gastrointestinal symptoms, or to stop taking it all together, that it is my call.

(One month ago he started me on 10mg in am for 2 weeks, then increase to 20mg in am then, at either dosage from day one i had these symptoms?

He said he can see me on October 12th and we will talk more. He is reluctant to try Norpace with me now.)

She said, he doesn't know what to do with you next, your body is rejecting and not responding to all medications, and everything tried has notably made you worse. We don't know if there is anything more we can do for you or what we can do for you. We are sorry, and we will see you on the 12th.

If you need to before then go to the ER.

(I have to go cry now.)

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I am sorry. I was there were you are not so long ago, and it is just the most helpless feeling--the ER couldn't help, cardio did not know what to do, I just had to wait over a month to get to a pots dr. It is so hard when even the drs do not help whethter they want to or not. I nkow what you are going through, and I am sorry and know how helpless you feel. I just started drinking tons, doing what little exercise I could do, eating when I could, praying, it is just so hard. What really helped me was the right beta blocker-not perfect, but ok. This disease is so hard. One- for you really feel no one can help. One thing I have learned is you have to help yourself-you have to eat, drink, and really I think exercise has helped immensely. Compression hose too. I think exercise will kill me all the time (the chest pain gets to me), and it is the last I want to do, but even if you can do 5 min and start there. Something to keep your body up. take care and just know I understand and wish you a fast week. It is so hard when all you do is live for the dr appts. that was all I cared about-hoping someone would help. JenniferTX

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faith-

i'm so sorry that you've been having such a rough time of it.

re: beta blockers in general, i wanted to answer your question re: if anyone had successfully treated POTS & NCS without the use of a beta blocker. while i'm on a beta blocker now, i thought i'd let you know that i went years using other meds/treatment options, at times quite successfully (i.e. being able to work full-time, work out, etc.). i definitely had ups & downs still, but other than for fairly explanable reasons (i.e. getting a cold) my symptoms were managable for significant chunks of time. my meds were different combos over the years including midodrine, florinef, continuous BC, concerta, lexapro, etc....but other than an initial unsuccessful attempt on toprol (a beta blocker) in 97, i never touched one until this past spring. now a low dose of inderal is part of my med combo, but i thought i'd let you know that i did pretty well at times over several years without the use of a beta blocker at all. so there are other options.

hang in there,

B) melissa

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Thank you all for your replies, support, and input. Can't decide what to do with the meds til I see the doctor who can't decide. So just pushin on as best I can and hanging in there. Reminding myself, at times with this illness I have had ups and other downs. (None, quite as sickly as this one...but another up must come!)

Just praying for help with my next round of appts. with the docs, as I do each time, then I await the next medication trial with the hopes we've found a better one!

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Guest Finrussak

Faithinspires...you are going thru so much!!! I am so sorry and share your pain.

As for meds, have you tried asking for pediatric LIQUIDS ( or suspensions)?? in this way you are in full control of the tiny doses. I have found doing this, I can then take a small amount and journal the responses. THEN I take the info to my Drs who can then no longer deny how little it takes for me!!

Even if not usually made that way almost every drug can be done this way if your pharmacist "compunds"...Ive even had mine dissolve stuff ( minocycline) in almond oil !!!!!! for digestibility, absorption and to titrate a lower dose.

Plus cutting pills and opening capsules is a dangerous thing...always always call the pharmacist and have them look up what the coating is for. Even if NOT "time release" the coatings are often used so that the meds dissolve in specific areas of the GI tract and the same for capsules (my sis works for McNeil/J and J).

Plus liquids will enter the blood faster if you need them to!

As for Betas...I am not able to take even the tiniest dose of them. They slow my heart too much but more importantly my BP RISES!!!! I have had cardiologists doubt this so twice I have had "challenges" where in the waiting room I am given a small dose and then watched...nurses to take serial BP and Pulse...BOTH times it happened...severe BP increases plus a variety of other side effects!!!

I refuse to take a drug that makes me take another one for the side effects!!!

Plus I get bad chest pain and mild ischemia ( lack of blood to heart muscle like what happens in heart attack). Calcium channels are no better,

BUT I also have probable damage in the cardiac chemistry due to the Lyme, so It may be just me.

As for poosible betas...ask about...Pindolol- I was told by a specialist at Stonybrrok center, LI NY that it was better for POTS.. as it also blocks some SSRI autoreceptors...and since many POTS pts need SSRI's this drug works with them and alone to help that chemistry. You can find more about it at whatmeds.com .I havent tried it tho due to my history and experiences.

hang in there...I know how hard it can be to be ill and with kids... ;)

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I am on my 3rd beta blocker. Toprol made my heart rate 40 all the time and I could not get out of bed. With Atenolol my blood pressure dropped and heart increased by 30 everytime I stood. I also believe after stopping it that it had worsened my anxiety and depression. Now I am on Nadolol first 10mg now 20mg.

On the upside it seems like I have less anxiety, my heart rate doesnt seem to get quite so high as it did on the atenolol. The downside since I have been on this I have diarrhea nearly everyday for hours. My insomnia is worse than ever. My sleep cycle is further out of whack...get to bed later...only with the help of other medications. Keep waking up. So I end up sleeping later. I am in bed several hours but still failing to get enough sleep or quality sleep. The medication initially made me so groggy, I felt I could barely move. Some of that is not as extreme now, but my level of functioning is half of what it was before I started this medication. I am nauseated all day. Also, since I have asthma and I am on advair and albuterol, my asthma has worsened. I am short of breath. Advair is working less, needing albuterol more. I see the cardiologist in 2 days. I don't know if I want to be on a beta blocker at all. Is there anyone else with input about side effects they had from beta blockers. Does anyone else manage to control NCS and POTS without a beta blocker. I am at my wit's end. I feel like my doctors don't listen. I feel like a guinea pig in a bad experience. I feel like all the medications have done is worsen the quality of my life with the side effects. I am scared and depressed about this. Any input would truly be appreciated beyond...beyond! Thanks!  I am in Wisconsin.  Does anyone have a doctor in my state that they would recommend?

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hello there, i am so sorry to see how unwell you are. i am currently suffering from night time tachycardia, so i really sympathise. i live in the uk. at the moment i am waiting for a 48 hour heart monitor test so my doctor can get a clearer picture of what happens before she tries me on a different beta blocker, as they work in different ways. i hope your symptoms have been similarly analysed. keep going if you can, because there are many different BBs to try.

on a daily (nightly) management note, i find it helpful to get up as soon as i manage to fully wake myself, otherwise i keep sliding up and down the whole tachy rollercoaster thing. i then stay up reading, or doing whatever i find pleasantly distracting, for an hour or two in order to break the pattern. this often helps me get a few more hours decent sleep without a sleeping pill. i was starting to feel a psychological dependence on them, so now the moment i feel that way i decide not to take one that night, but to simply manage on less sleep. it is very difficult, but overall remaining calm and emotionally in control even during a tachy episode seems more useful to me than popping a pill in a panic. with this approach, i am able to keep myself down to 3-4 sleeping pills a week, sometimes just a very low dose one. in fact, i am online now as part of tonight's strategy (it's 1am here!).

also, different sleeping pills can give you different effects on waking - i've had some that have made me panicky and tachy, so it's worth asking your doctor about this, or investigating yourself. wishing you all the best, please do reply if this is helpful, or you would like a bit of supportive chat.

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Hi Faith,

Just catching up to this post now. It sounds like you have a dr. who really is trying to help as well as his nurse, but it so unfortunate to hear those words, we don't know what else we can do". Don't give up hope, hang in there, from your posts you have been through a lot already and I'm sure you will get through this one also. There's something out there or some combination I'm sure that will help you.

Keep the faith ;)

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Thank you for the responses! Today I am soooo tired. Had the insomnia last night despite trying. Slept 5 hours got the kids off to school. Spent 3 1/2 hours getting about 2 hours of very disturbed sleep. Finally, got up having chest pain. My hr was 142 then, had my meds and waited for them to go to work. My blood pressure is good now, my heart rates around 100 resting. Just feeling completely exhausted and wiped out, waiting for that later part in the day where I feel slightly better for a little while. I am so achey and tired, I sooo just want to take a nap. But no dice...that would mess up my sleep further and my babies are due to come home soon. So I must push on, as it is Friday, our traditional blow off everything else and have some fun together day! Thankfully, they are very accomadating when my health isn't cooperating. So, with the cold outside and not feeling my best today, I think we will opt for watching this movie we have been saving for a special night. Toothpicks in my eyes...that should do it...lol!

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Please know that I'm thinking of you! I hope you get some answers. I understand how frustrating it can be to be told "We don't know what else to do for you".

I hope that at the very least having a "movie night" will lift your spirits.

Cry when you need to because it's not good to hold it in and then try to find some times to put it out of your mind if you can.

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