Strange Episode...thoughts?

[Pistol]

@RobinB - metoprolol is a beta blocker commonly used as first med to control tachycardia in POTS. Some people it helps, some it does not. Warning though: it is very common that it will make you tired for the first few weeks. That is normal for beta blockers and in most cases this improves after the first few weeks. Just a heads up. I also used to have periods of low HR in the 50's but when I took Metoprolol it did not seem to make this worse. In my case metoprolol did not help since I have HPOTS and also have high BP with the tachycardia. However, I respond very well to Carvelidol, a beta blocker that also has apha-blocking properties. 

Don't be scared to try it - the low dose should be fine. They often suggest that if it makes you tired to only take it in the pm - maybe if you get too sleepy initially you could ask your cardiologist about this. But - as I said - in most cases the tiredness goes away. 

[RobinB]

17 minutes ago, Pistol said:

@RobinB - metoprolol is a beta blocker commonly used as first med to control tachycardia in POTS. Some people it helps, some it does not. Warning though: it is very common that it will make you tired for the first few weeks. That is normal for beta blockers and in most cases this improves after the first few weeks. Just a heads up. I also used to have periods of low HR in the 50's but when I took Metoprolol it did not seem to make this worse. In my case metoprolol did not help since I have HPOTS and also have high BP with the tachycardia. However, I respond very well to Carvelidol, a beta blocker that also has apha-blocking properties. 

Don't be scared to try it - the low dose should be fine. They often suggest that if it makes you tired to only take it in the pm - maybe if you get too sleepy initially you could ask your cardiologist about this. But - as I said - in most cases the tiredness goes away. 

Great thank you for letting me know.  I'll do the first dose before bed.  Glad to know it's commonly used.

[Guest KiminOrlando]

I'm on 50mg extended release metoprolol. I take it at night. I felt tired for a while when I started it, but it is better. 

My understanding is that it doesn't lower HR constantly. I think it only keeps it from getting too high. It acts like a control since our 'control' is broken. 

Hope it works for you, but don't give up if the first one isn't the right one. There is a lot of trial and error with this illness. 

[RobinB]

30 minutes ago, KiminOrlando said:

I'm on 50mg extended release metoprolol. I take it at night. I felt tired for a while when I started it, but it is better. 

My understanding is that it doesn't lower HR constantly. I think it only keeps it from getting too high. It acts like a control since our 'control' is broken. 

Hope it works for you, but don't give up if the first one isn't the right one. There is a lot of trial and error with this illness. 

So if it stops it from getting to high is it safe to attempt to exercise? Not that I really can, but in the event I feel better and I want to try?

[Guest KiminOrlando]

I never had trouble, but I also can't exercise much. Good question for your cardiologist. I think you may have trouble hitting your target heart rate.

[RobinB]

1 hour ago, KiminOrlando said:

I never had trouble, but I also can't exercise much. Good question for your cardiologist. I think you may have trouble hitting your target heart rate.

Right. Well I don’t exercise as I can’t really. The most I could do is walk for a little bit or ride my recumbent bike which would get me to like 160 without medications but shouldn’t of course. Thanks for sharing.

[RecipeForDisaster]

It has made a big difference in my ability to sleep. My HR doesn’t go much below 55 on it, which seems to be fine. I was athletic enough that it was around there before I got sicker.

[Pistol]

@RobinB - I would give it a good few weeks before you start being more active. This is for two reasons: just because your HR might improve does not mean your exercise intolerance will too. HR is just ONE symptoms, and exercise usually triggers all of the others like fatigue, anxiety, irritability, dizziness etc. These will still occur even if your HR improves, so imcreasing activity slowly is very important. --- The second reason is that if you see your HR is more stable and you start being more active it might set off your POTS - and then you think the Metoprolol is not working. 

The perfect scenario is this: start the med and do everything as usual, don't increase your activity level initially ( you may not feel like it anyway due to the tiredness ). Then after a few weeks, if you feel improved - start doing a little mild exercise. And if you don't feel any different your doctor might increase the dosage until it works. Or you may need a different med. In my case I started with Metoprolol and then tried numerous other, completely different meds until I found the ones that work for me. 

Remember - the princess kissed the frog before she found her prince!!! I hope you will find metoprolol helpful, may people do. Good luck - keep us posted and give it some time!!!

[Chuske]

11 hours ago, RobinB said:

Right. Well I don’t exercise as I can’t really. The most I could do is walk for a little bit or ride my recumbent bike which would get me to like 160 without medications but shouldn’t of course. Thanks for sharing.

Hi Robin. As I'm finding in this pots flare it's all about stabilising your condition with the help of your doctor and other lifestyle measures. Once you have things a bit more stable it should be easier to start building up again.

So don't be in a hurry to do too much exercise and also remember deep healing rest is important too.

That said I know how horrible and scary it all is but we will get through it. As the famous Churchill quote says "if you're going through h***, keep going".

Hope the meds help you get the heart rate down.

[RobinB]

Thanks for the encouragement.  I'm picking up the medication today and will start it this evening so I can sleep if it makes me tired.  

Lately I'm just feeling really hopeless.  I'm sure it's normal to feel that way, but I keep asking why?  Why do we have this, why do we have to live this way for what seems like forever.  It's just not fair.  Not trying to throw a pity party, but some days I really feel like it's not worth it anymore.  I can't even participate in life in a meaningful way.  I spend every day waiting for bed and then every morning when I open my eyes I'm reminded of the h*** that awaits.  I have a 9 year old son and got sick shortly after his birth which means I've been this way his entire life.  He doesn't even know the person that I was before and maybe that's for the best.  I felt better for a few years but was still having symptoms daily.  I just tried to push through and not obsess about it.  Now I'm back to obsessing about my condition and feeling completely hopeless again.  Praying this medication can help.  Sorry for ranting I just needed to get that out.

[Chuske]

4 hours ago, RobinB said:

Thanks for the encouragement.  I'm picking up the medication today and will start it this evening so I can sleep if it makes me tired.  

Lately I'm just feeling really hopeless.  I'm sure it's normal to feel that way, but I keep asking why?  Why do we have this, why do we have to live this way for what seems like forever.  It's just not fair.  Not trying to throw a pity party, but some days I really feel like it's not worth it anymore.  I can't even participate in life in a meaningful way.  I spend every day waiting for bed and then every morning when I open my eyes I'm reminded of the h*** that awaits.  I have a 9 year old son and got sick shortly after his birth which means I've been this way his entire life.  He doesn't even know the person that I was before and maybe that's for the best.  I felt better for a few years but was still having symptoms daily.  I just tried to push through and not obsess about it.  Now I'm back to obsessing about my condition and feeling completely hopeless again.  Praying this medication can help.  Sorry for ranting I just needed to get that out.

Good to write down how you feel. Can really help.

In this flare up I just keep reminding myself this will pass and it will get better. I did before. The trick in these difficult periods is to ride it out.

[Pistol]

Oh @RobinB - you sound exactly like I used to feel! I too had this since my daughter was born, but I did not get to the breaking point until she was 4 years old. I ended up passing out and taking seizures all of the time and eventually had to stop working ( I was a nurse for 23 years and having to stop tore my heart out! ) I felt useless and " a waste of human energy " b/c not only was I disabled but I could not even play with my daughter or keep house! I became very depressed. After experiencing all of the stages of grief I eventually arrived at acceptance. You can learn more about my story here

And no - you are not ranting. This is what POTS looks like, you are going exactly through what we all experience at some point - and it is good and healthy to talk about it. And just a tip: pushing through is not a good idea. We all do it but I am an example how we can make POTS much, much worse by not listening to our bodies, by ignoring the symptoms and by rejecting our limitations. Had I not thought that this will eventually stop, that I just needed to keep going and that "the next pill will be the one that fixes everything" … I would have not gotten as bad as I was. And I do not wish that for you, so I want to stress to you that it is EXTREMELY important to limit yourself to the bit you can do right now. As @Chuske said: we need rest. As long as we keep trying to live a normal life and push through our symptoms we will not improve. It is rest and carefully balanced exercise to tolerance along with all of the self-help measures like increasing water and salt and wearing compression hose that ( in addition to medications ) can improve your quality of life. 

[RobinB]

19 minutes ago, Pistol said:

Oh @RobinB - you sound exactly like I used to feel! I too had this since my daughter was born, but I did not get to the breaking point until she was 4 years old. I ended up passing out and taking seizures all of the time and eventually had to stop working ( I was a nurse for 23 years and having to stop tore my heart out! ) I felt useless and " a waste of human energy " b/c not only was I disabled but I could not even play with my daughter or keep house! I became very depressed. After experiencing all of the stages of grief I eventually arrived at acceptance. You can learn more about my story here

And no - you are not ranting. This is what POTS looks like, you are going exactly through what we all experience at some point - and it is good and healthy to talk about it. And just a tip: pushing through is not a good idea. We all do it but I am an example how we can make POTS much, much worse by not listening to our bodies, by ignoring the symptoms and by rejecting our limitations. Had I not thought that this will eventually stop, that I just needed to keep going and that "the next pill will be the one that fixes everything" … I would have not gotten as bad as I was. And I do not wish that for you, so I want to stress to you that it is EXTREMELY important to limit yourself to the bit you can do right now. As @Chuske said: we need rest. As long as we keep trying to live a normal life and push through our symptoms we will not improve. It is rest and carefully balanced exercise to tolerance along with all of the self-help measures like increasing water and salt and wearing compression hose that ( in addition to medications ) can improve your quality of life. 

You’re story made me cry. That’s exactly how I feel and I don’t want to live like this anymore. I’m afraid of everything. I get up in the morning and just have to make it to my recliner in the living room where I remain all day with the exception of using the bathroom. It’s horrible. I am going to see a therapist as I have started having thoughts of not wanting to go on and that my family is better off without me. Maybe my son could have a better life if I wasn’t holding us back.

[Sushi]

23 hours ago, RobinB said:

Thanks for sharing your experience.  My concern is that my resting pulse is usually mid 50s to mid 60s.  I'm guessing this medication lowers your pulse consistently and not just when you're upright.  I think my dosage is the same as yours actually.  I just want to be able to cook dinner and grocery shop again .  

Yes, it will lower your pulse “across the board” so you and your doc may have to experiment to find your sweet spot. One note about metropolol—it is metabolized through CRP2D6 and some of us have a genetic error in that pathway which makes that a problematic choice for a beta blocker for those affected. Have you ever had any genetic tests? This came to my notice when my cardiologist did a Pharmacogenetics test and I did have an error in this pathway. She was just about to prescribe a beta blocker so she chose propranolol instead of metropolol. I am glad that I have had this testing as it pointed to certain drugs that I should never take and I began to wonder if some of our intolerance of medications has to do with genetic errors like this.

[RobinB]

9 minutes ago, Sushi said:

Yes, it will lower your pulse “across the board” so you and your doc may have to experiment to find your sweet spot. One note about metropolol—it is metabolized through CRP2D6 and some of us have a genetic error in that pathway which makes that a problematic choice for a beta blocker for those affected. Have you ever had any genetic tests? This came to my notice when my cardiologist did a Pharmacogenetics test and I did have an error in this pathway. She was just about to prescribe a beta blocker so she chose propranolol instead of metropolol. I am glad that I have had this testing as it pointed to certain drugs that I should never take and I began to wonder if some of our intolerance of medications has to do with genetic errors like this.

No I haven’t had genetic testing. When you say we shouldn’t take it do you mean it’s dangerous? I’m very apprehensive about taking medication to begin with so I don’t want to take something that could harm me. 

[Pistol]

4 minutes ago, RobinB said:

When you say we shouldn’t take it do you mean it’s dangerous?

@RobinB - no, it is not dangerous. But as with ANY drugs ( even Tylenol, Benadryl or even cough drops ) we can have a reaction to them. Sometimes this could be caused by genetic abnormalities, sometimes allergies and other times an underlying condition we are not aware of. EVERYONE runs that risk EVERYTIME we try a new med. But if we NEED a medication and do not try because we are too afraid - then how will we get better? Anytime a physician orders a med it could potentially cause some unwanted effect. I think @sushi means that if we get this genetic testing done we will know what meds would cause us difficulty. 

[Sushi]

31 minutes ago, RobinB said:

When you say we shouldn’t take it do you mean it’s dangerous?

I was given a wallet card with a list of medications that could be dangerous for someone with my genetic errors--metoprolol was one of them. These medications are now listed in my medical records. When I had a cardiac procedure a year ago, the hospital took this list very seriously. Here is what it said about metoprolol: "Significantly increased sensitivity to metroprolol--poor metabolizer. Based on the genotrype result, this patient is at risk of excessive beta-blockade when taking metoprolol at standard dosage.  Consider alternative beta-blockers such as bisoprolol or carvediol, or prescribe metoprolol a a lower dose. When compared to a normal metabolizer, a poor metabolizer may require a 75% dose reduction...If metrprolol is prescribed, be alert to adverse events (e.g. bradycardia or cold extremities)."

This testing alerted me to the role of genetics in processing drugs. Some of the other medications on my "don't go there" list were also quite common. So our usual practice of starting with low doses really makes sense if you haven't had genetic testing. Pharmacogenetics is a very specific type of genetic test that focuses on what genetic errors you have (SNPs--single neucleotide polymorphisms--and how they affect metabolisation of drugs. Another drug on my list--Amitriptyline) is one that I had been given in the past and had had a bad reaction to--now I know why.

[RobinB]

23 minutes ago, Sushi said:

I was given a wallet card with a list of medications that could be dangerous for someone with my genetic errors--metoprolol was one of them. These medications are now listed in my medical records. When I had a cardiac procedure a year ago, the hospital took this list very seriously. Here is what it said about metoprolol: "Significantly increased sensitivity to metroprolol--poor metabolizer. Based on the genotrype result, this patient is at risk of excessive beta-blockade when taking metoprolol at standard dosage.  Consider alternative beta-blockers such as bisoprolol or carvediol, or prescribe metoprolol a a lower dose. When compared to a normal metabolizer, a poor metabolizer may require a 75% dose reduction...If metrprolol is prescribed, be alert to adverse events (e.g. bradycardia or cold extremities)."

This testing alerted me to the role of genetics in processing drugs. Some of the other medications on my "don't go there" list were also quite common. So our usual practice of starting with low doses really makes sense if you haven't had genetic testing. Pharmacogenetics is a very specific type of genetic test that focuses on what genetic errors you have (SNPs--single neucleotide polymorphisms--and how they affect metabolisation of drugs. Another drug on my list--Amitriptyline) is one that I had been given in the past and had had a bad reaction to--now I know why.

Okay I’m on the lowest dose possible and I’m supposed to split it in half and take it twice a day. Thanks for sharing. I know it’s a common theme, but I really don’t have much help from doctors. I gave up and got tired of them not taking me seriously. Now I want to find my cause again and that’s why I want to go to Mayo. As long as I’m not going to have a heart attack or something I will try the medication.

[Sushi]

5 minutes ago, RobinB said:

I gave up and got tired of them not taking me seriously. Now I want to find my cause again and that’s why I want to go to Mayo. As long as I’m not going to have a heart attack or something I will try the medication.

Yes, good to follow your cardiologist's direction, as as he/she thought it would help. At a low dose, you should be fine. And if it doesn't suit you, there are many other beta blockers. As for finding the root cause at Mayo, it doesn't have a great reputation amongst Dysautonomia patients--maybe it has improved? Have you considered going to one of the autonomic specialists listed on this site?

[RobinB]

2 minutes ago, Sushi said:

Yes, try the medication. At a low dose, you should be fine. And if it doesn't suit you, there are many other beta blockers. As for finding the root cause at Mayo, it doesn't have a great reputation amongst Dysautonomia patients--maybe it has improved? Have you considered going to one of the autonomic specialists listed on this site?

I saw Dr. Barboi at Northshore in 2016 and he was the one who diagnosed me. He ran a few tests that same day and said it’s probably caused by hyper mobility and that was that. I never went back. And now I have different insurance and can’t see him.

[Sushi]

Just now, RobinB said:

I saw Dr. Barboi at Northshore in 2016 and he was the one who diagnosed me. He ran a few tests that same day and said it’s probably caused by hyper mobility and that was that. I never went back. And now I have different insurance and can’t see him.

Well, many of us do have hypermobile EDS, but there is usually a lot more going on. I had comprehensive autonomic testing and it revealed a number of problems. Does your insurance cover any of the other autonomic specialists?

[RobinB]

11 minutes ago, Sushi said:

Well, many of us do have hypermobile EDS, but there is usually a lot more going on. I had comprehensive autonomic testing and it revealed a number of problems. Does your insurance cover any of the other autonomic specialists?

I don’t think so. I switched to an HMO for financial reasons and plan to switch back to the PPO when open enrollment comes around. I also saw Dr Gilden and she ran a ton of tests on me but nothing was diagnosed. Maybe it is “just pots”.