Sleepbree Posted January 12, 2014 Report Share Posted January 12, 2014 Hi I am new to the forum. I was diagnosed recently (>6 mos) and it's been a whirlwind since. It was determined that I have POTS (positive tilt-table) along with atrial tachycardia, which my EP then ablated in November. Since the ablation, I've had chest pains that the EP says is due to a small fluid collection around my heart. I was treated with anti-inflammatories and see him again for follow-up tomorrow. My problem since has been that even though the ablation was to solve the issue of palpitations (and I've still had a couple small episodes), I've had a myriad of symptoms that cased the EP to gradually up my metropolol from 25 mg to 100 mg per day. I wear a hr watch and still notice wide fluctuations in my hr, from 80-107ish upon position change even when medicated with the higher dose.I am a busy mom of 3, own my own business, and at the age of 34, am feeling horrible. I feel so tired during the day that I can't focus on anything but the desire to nap. By the end of the night my vision is blurred, and I have no energy for tasks at home. My EP gave me clearance to exercise but the thought is laughable given my current energy levels.I have many questions, and plan to use the search function to see if they've been answered before, but my immediate questions are: if you are on Metropolol, does it make you feel this tired as well, and also if so, how do you manage to function during the day at work? i'm wondering if perhaps i should look into another med.Another keys piece of information is that I was also diagnosed with Chiari-1 Malformation. My neurologist seems to think this is unrelated but it's hard for me to deny the evidence that the two may be related considering the high incidence of people with Chiari also suffering with POTS. Right now the Chiari is categorized as being very mild, and causes me to have headaches in the back of my head, pain in my shoulders, and neck stiffness. I'm feeling that the symptoms from both diagnosis are blurring together and it's hard to determine what is responsible for the day's symptoms. I'm feeling at this point that there's not much value in trying to figure that out. Quote Link to comment Share on other sites More sharing options...
corina Posted January 12, 2014 Report Share Posted January 12, 2014 Hi Sleepbree, welcome to our forum! I've been on metoprolol but only when on a really high dose I got "over" tired. I think that POTS in itself can cause tiredness as well. Have you had this problem before you started the meds? If not changing bb's, like you mentioned, might be an option! Quote Link to comment Share on other sites More sharing options...
Sleepbree Posted January 12, 2014 Author Report Share Posted January 12, 2014 Hi Corina! Thanks for your reply. I have felt pretty tired all along, but just recently it has started to affect my daily routine. Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted January 12, 2014 Report Share Posted January 12, 2014 Hi,Sorry I can't answer your questions, but I just wanted to say welcome to the forum! I'm sure there are many other people on here who will be able to help you out with your questions.Best Wishes,Lyla Quote Link to comment Share on other sites More sharing options...
dkd Posted January 12, 2014 Report Share Posted January 12, 2014 Is your blood pressure low? The first beta blocker that I tried (atenolol) made my BP drop into the 90s/50s and I was extremely tired. I tried another one that I had a weird reaction to and the third one is what worked--heart rate staying below 100 and BP in the 110/60 range. So, do talk to your doctor about maybe trying another beta. Good luck! Quote Link to comment Share on other sites More sharing options...
Krissy21 Posted January 12, 2014 Report Share Posted January 12, 2014 Hi, welcome to the forum! I think I can help you with some of your questions. Like you, I also had pots and atrial tachycardia. I also had an ablation that got rid of the atrial tach but I'm still left with the dysautonomia. Beta blockers can definitely make you tired but this can improve after being on the medication for a while. You may also need to try different beta blockers to find one that works best for you. For example, metoprolol never worked well for me. Too many side effects and didn't control my heart rate enough. But, for me, atenolol works great and the side effects are minimal. Exercise is very important for pots patients. It has helped me improve a lot. I had to start very slowly at only 5 min on a recumbent exercise bike at a time. Now I can do 30 min on the bike. Doing an exercise that involves sitting down, like a recumbent bike or rowing machine, can make it easier. Feel free to ask as many questions as you want. There are a lot of very knowledgable people here for help and support. Krissy Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 12, 2014 Report Share Posted January 12, 2014 Hi. Welcome to the forum. Sorry you've had a reason to find us.My guess would be like others have said. The beta blocker would be the first thing to suspect as they can be notorious for causing fatigue, especially at higher doses. While the chiari malformation causes headaches etc, I would think it would be unlikely to have started causing you that kind of fatigue suddenly. Probably you've had that for a long time, so it seems less likely to be the culprit in this situation.Perhaps being a "busy mom of 3, owning your own business" with POTS is part of the issue as well. POTS in and of itself can be a very fatiguing illness. Having 3 kids is also extremely tiring (I have 4 so I can relate). Owning your own business I can only imagine adds a whole extra layer of stress and fatigue on there. Add a beta blocker on top and it looks like a prescription for overwhelming fatigue to me. I'm so sorry you're having to deal with this in the prime of your life when you want to be doing all that you can. I think POTS seems to hit a lot of people who are similar in that they are/were very active, highly motivated, high achieving folks who suddenly got slammed with it. Hopefully, this will just be a temporary setback. Is there is any way you can dial back on some of your activities so you can take care of yourself now in the hopes that things will calm down and reset? Maybe allow you to find the energy to start a progressive exercise program etc? It might pay off in the long run if you can.Best wishes! Quote Link to comment Share on other sites More sharing options...
Sleepbree Posted January 12, 2014 Author Report Share Posted January 12, 2014 Thank you for your replies! Krissy, I know how important exercise is, I really want to, I am just so exhausted. I used to be very fit, running 10 miles on the elliptical per day. I miss that old me. The EP said I need to force myself to do it. I work a job 8-12 hours a day on my feet. I know exercise begets energy, but part of me is also terrified. The last time I exercised, that same day my hr went up to 186 bpm (was wearing an event monitor) out of nowhere and I couldn't help but wonder if the exercise earlier that morning caused it. The EP says this is not life threatening, he swears I'll be ok, but it sure doesn't feel that way when I am having chest pains and palpitations. I am going to talk to him tomorrow about maybe changing the meds. Quote Link to comment Share on other sites More sharing options...
Sleepbree Posted January 12, 2014 Author Report Share Posted January 12, 2014 Chaos, yes it did suddenly come out of nowhere. The very first time I was taken to the hospital, I had been really sick with a virus. The ER doc said the palpitations were due to taking sutafed. Well, I had taken it before so I knew better, but they sent me on my way and that was that. Then it kept happening, and then the series of doctors appointments started. I wore a monitor for a month and they caught it a few times, and i also started reading a LOT. I actually was referred here from the chiari support forums because someone mentioned my symptoms sounded like POTS. I then requested to do the tilt-table. Amazingly, I literally have the internet to thank for my diagnosis because I think if i hadn't read up on it I never would have put 2 and 2 together and neither would my EP. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 12, 2014 Report Share Posted January 12, 2014 Oct 5,13 it hit me. Mid nov tilt table test. Thanks to Internet and the persistence of my doc whom i work for.I was bedridden for 1 month,barely moving for 1 month and started exercising end of nov at 5 min 3 times a week. I got a ride to the gym. It was exhausting. Now I'm up to 15 min 3x a week and can drive myself. I'm not on meds at moment and am going to work a few hours a week. I'm far away from autonomic clinics and due to my large Fam and small income. Hang in there. We are here and most importantly understand. Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 13, 2014 Report Share Posted January 13, 2014 Same here....if it wasn't for the internet and this site in particular, I would never have been diagnosed when I got sick in 2009. I am so grateful for the fact that the internet is available and is changing medicine in this way. Have you looked into ME/CFS as well? Here is the International Consensus Criteria linkhttp://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstractThere is a lot of overlap between POTS and ME/CFS. You might check this out and see if you fit the criteria for this as well. If so, then you might want to check into seeing a good immunologist to follow up on some immune testing. Quote Link to comment Share on other sites More sharing options...
Krissy21 Posted January 14, 2014 Report Share Posted January 14, 2014 I completely understand how terrifying it is. I am still afraid to work out alone since I have passed out during exercise before. I get the chest pain and palpitations too if I push too hard. I've had three exercise stress tests and the doctors say my heart is fine and it won't kill me so I just try to push through it. It does get easier with time, but I understand where you're coming from. For me, this pots stuff is hard enough to deal with in college, I can only imagine how exhausted you are with 3 kids and a full time job on top of the pots. I hope you can change your meds around and find something that works and doesn't add to the fatigue. Quote Link to comment Share on other sites More sharing options...
Raisin Posted January 16, 2014 Report Share Posted January 16, 2014 Hello! I am also a newbie and have started Metropolol as well as Midodrine. I have noticed for myself that the low dose of Metropolol has helped me keep on moving but when we tried to increase it (doc and I thought since it was helping perhaps more would help even more) , I felt worse altogether. Very tired and quite nauseous....so back down we went! Quote Link to comment Share on other sites More sharing options...
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