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.

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.

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. 

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.

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.

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.

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?

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.

23 hours ago, Notwhattheyc said:

I have a POTS flare up now for 9 weeks. I think the stress of lockdown, work and school is what set it off. I have been miserable. Prior to this incident, I hadn’t had a flare up in 10 months and that only lasted 3 days. Hope to get better soon. The doctor keeps saying I will, but I am frustrated. I truly feel with everyone in this situation.

I'm dealing with the same.  I think a lot of it for me is stress induced and then there is nothing else to focus on other than how crappy I'm feeling.  My cardiologist today said most people with POTS get better in the 3rd or 4th decade of life....really now?  Wouldn't that be nice.  I know teens can outgrow it sometimes, but I'm going on 10 years and got diagnosed at 29 after being sick for 5 years already, so it's not looking good lol.  Can I ask what you attribute to your better days?  Anything specific you were doing that was helping?

49 minutes ago, RecipeForDisaster said:

I’ve been helped quite a bit by metoprolol. I started with 12.5mg at bedtime and I sometimes take up to 50mg at bedtime now.

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 .  

4 minutes ago, Sushi said:

As Pistol said, it is fine while exercising because it is necessary to the physiology of exercise and it is not sustained--it returns to normal after exercise. Sustained rates over 100 that go on for protracted periods are what causes damage. I don't remember what the cut off for "protracted" is, but your cardiologist should be able to help get your upright HR down. Note: professional athletes or people who train intensely many times per week (and thus have a high HR for protracted periods) are much more at risk for Afib.

That's very interesting!  I had my video appointment with the cardiologist today.  She prescribed metoprolol?  I did explain to her that I have medication anxiety as I seem to be very sensitive to everything.  She prescribed 25 mg and told me to take half in the morning and half before bed.  Obviously I'm nervous to even try it, however if I want some quality of life I have to give it a shot.  She had no comment on my episode Sunday, just said mmm hmmm and carried on.  Who knows.  I plan to start the medication when I can have someone with me for a few days just in case I have a reaction to it.  My body hates everything.  I have reactions to food, medicine, chemicals you name it.  Any experience with metoprolol?

9 minutes ago, Sushi said:

 

I don't know how long your HR stays above 100, but I learned on an Afib forum (lots of really knowledgeable people there) that having a pulse over 100 for a protracted period can damage the heart. So, while I totally understand your response to medications, a good cardiologist or electrophysiologist should be able to find a way to keep your HR down. There are many ways to approach this, so sending best wishes to get to the bottom of this. 

Yikes that's scary.  Um it stays at whatever it's at for as long as I'm upright....It may go down to like 120 or so if I'm walking around but not below 100.  Meeting with my cardiologist tomorrow.

I do have a question though....forgive me I'm not very informed on most of this stuff.  If it's dangerous to be over 100 then why is it okay for people to exercise?  Or is it the fact that I'm not exercising that makes the elevated heart rate dangerous?

I sent my primary doctor a message regarding the episode I had yesterday.  Hopefully she can help point me in the right direction.  I am ready to try some meds if need be.  I can't function like this anymore.  My anxiety is through the roof, every little thing sets me off it seems.  A knock at the door, a bird flying by, an email from a co-worker.  I feel like I can get so easily overstimulated and will have a nervous breakdown.  That's why I'm thinking my episode was some kind of panic attack, although I haven't had one in probably 12 years.  I'm going to start a journal so I can keep track of my sleep, eating, BP and HR readings, etc and see if I can come up with some kind of plan.

Just now, Chuske said:

Anxiety triggered my recent relapse too.  Fits with the research article @issie shared showing the brain can get stuck in inflamed state after high or prolonged stress.

Hope you feel better soon I'm going through similar horrible attacks at times. Very scary.

It is horrible!  I can empathize with you.  I think with everything going on in the world currently my anxiety has been at an all time high.  I'm a naturally anxious person and I would love to think that what happened to me yesterday was a panic attack and nothing more.  Fingers crossed at least.

@Pistol  it sounds crazy when someone points it out like that LOL.  But correct.  I tried a beta blocker and florinef? years ago and had a bad reaction to both.  I'm extremely sensitive to medication so I have a fear of using any.  I know I need to just get over it.  To be fair I had a period of about 2 years long where my POTS was 80% improved with no real reason that I could attribute it to.  It's only been the last year that it has come back with a vengeance and now I'm scrambling to figure out some way to function again. On top of it I believe I have an anxiety disorder.  So now when I'm really symptomatic it sends me into a spiral and I freak out which makes everything worse.

I drink about 8 ounce of water before I get out of bed and then sip water the remainder of the day.  I would estimate I drink about a gallon of water a day or more.  I do however pee a lot so not sure I'm retaining much of it.  I don't measure my salt intake, but I do liberally salt my food when I can.  I don't have much of an appetite ever so I have to force myself to eat anything most days.  I also drink one 8 ounce Gatorade in the late morning everyday.  I just ordered some LiquidIV that I found on Amazon and will give that a try. 

@Pistolthank you for the information! I’m not medicated at all. I kinda got my diagnosis, felt like I couldn’t be helped and carried on but lately it’s getting worse (or quarantine has me paranoid again). I’ll definitely discuss this with the cardiologist. I’m trying to get into Mayo as well.

Thanks everyone! Unfortunately I don’t have a POTS doctor at the moment (switched insurance last year) but I will bring it up to my cardiologist on Tuesday. The shaking was the scariest thing for me. I felt I would surely not make it out alive. I have never experienced anything like that before. I hate this disease. I admire everyone’s strength. Nobody can possibly understand what we go through.

Thanks! I am just really scared of it happening again or it being something other than POTS. I tend to blame everything on POTS and I worry that one day I’ll make the wrong call. I’m 33 if that matters at all. BP is fairly regular at 110-120/80 or so. I spend most days alone with my son and now I’m afraid to be alone.

Hi All,

I was diagnosed with POTS 4 years ago, been sick for 9 years total. I have the usual rapid heart rate when upright and other fun stuff . Overall I consider myself lucky as I am able to push through and do most things aside from anything physically strenuous. For example I can clean the house in 10 minutes intervals with breaks in between etc.

Today I woke up feeling strange (what’s new) and suddenly felt very odd. My pulse was normal when standing 100ish (usual is 140). I took my blood pressure which was 154/98. Very high for me. I rested and couldn’t squash the feeling that this is not okay. Decided to take a shower and see how I felt after. I’m in the shower for probably less than a minute and my whole body was shaking uncontrollably. I felt like I was going to die. I was home alone with my son and was freaking out. I stopped my shower and got out and got dressed. I called 911. They came to my house and got a resting pulse of 130 and BP of 160/100. They said it wasn’t alarming but if I wanted to go they would take me. I should also note that my right side of my body felt tingly from head to toe. I couldn’t leave my son home alone or take him with so I let them leave. My sister came over and we decided to forgo the hospital. I’m feeling physically and mentally exhausted. Within 20 minutes of the paramedics leaving my BP had gone down to 111/72 and my pulse 80 resting. 
 

Does this sound like a panic attack? Or should I be more concerned. I’m already afraid this will happen again!

Thanks!!

Wow that's awesome jknh9!  Thanks for sharing your experience.  I'm definitely going to give it a shot.  I was doing well with the exercise for a few months earlier this year but then I just got lazy about it.  I'll try that again too.  Are you still on meds jknh9?  I can't imagine being able to work out for 2 hours or go backpacking for days.  The old me yes the new me no way!

Lewis I'm so happy for you.  Do you credit this diet completely for your improvements?  Or do you think other factors played into it?  I'm going to start weaning off the carbs this week.  How were your symptoms prior to trying this diet.  Obviously you needed meds, but were you severly affected?  I just can't believe that a diet change could work this well.  Also how was your diet prior to making these changes?

Lewis - thank you so much for replying!  I'm going to try this.  Any advice starting out?  I cannot express how happy I am for you!  This is wonderful!!!!

Lewis I'm wondering if you are still feeling better?

Sylvie,

What do you mean by sickness behavior?

Thanks,

Robin

I also feel better on antibiotics.