Brye

Xanax ... 2 at bedtime. It doesn't help with the adrenaline surges or the tremor sensation but it makes me sleepy. That shortens the time I have to endure the adrenaline excess and tremors. Took some tonight actually and I'm about to fall asleep. Hoping that doesn't make me an addict taking it every night but it helps!! Good night!! Brye

I had another doctor appointment yesterday and again a pacemaker was recommended as probably some what helpful but not a cure. Anyone have a pacemaker story they can share. Potsgirl ... was it you who had one put in? I was wondering if it was worth it in the long run or do you regret having one placed? I was kind of hoping it would improve some of the lightheadedness. Any advice would be appreciated. I have bradycardia into the low 40's but no pauses or heart blocks. Backing off on the beta blocker hasn't gone well in the past. My primary diagnosis is POTS. Thanks!! Brye

Thanks for the tip Toddm!! Good to know. I really think the atenolol is contributing but going without it isn't pretty at all!!! I'll look into that! I've been diagnosed with POTS and that part is fairly clear but I haven't pursued a cause yet. That's going to require some traveling and some serious work for insurance approval. I'll look into the mitochondrial cause for sure. Is this the cause of your POTS? Brye

Didn't have room for the whole thing, I have POTS on mine. I also have heart patient on as well as my meds. EMT's won't have a clue I'm sure but at least they'll know it's a cardiac problem likely occuring. ER doctors will be able to at least google it! I have the sport band and a necklace. They hit me up for buy one get one 1/2 off toward the end of my order. Can't pass up a deal. Brye

I was hospitalized while they were trying to figure out what meds would work so I had 24 hour monitoring to be sure I tolerated the beta blocker. My HR"s went from 30's to 160 when I stood up. That was 2 years ago. I just went today for my loop recorder reading and there were times of HR"S down in the 40's that I was symptomatic (lightheaded) We're still working on that one. May end up with a pacemaker to control the Bradycardia. I've been putting it off hoping I could back off of the atenolol. It's not looking like that's going to happen though. I'm starting Midodrine tomorrow to see if that'll raise my BP enough and maybe even Increase my HR a bit. If that doesn't work I may need a pacemaker. It's so frustrating not knowing what the best option is. Even with the pacemaker it "might" be helpful. It's good my cardiologist is 3.5 hours away, it gives me quiet time for my pity party before I have to jump back into life again! Brye

Is there a 3rd option. Perhaps an EP who communicates? Between the 1st 2nd I would go with the 2nd if she's willing to help. My EP doctors have been the most helpful option for me. The cardiologists I have seen were very quick to diagnose but very hesitant to treat. Brye

EXHAUSTED!! All the time!! That's one of my worse symptoms. I had a couple fatigue exacerbations and one was mono and the other was a vit D deficiency. I know one of the side effects of my beta blocker is fatigue as well. I think I'm doomed to be tired. Treating the vit D deficiency and recovering from mono did help. Both those caused me to be so tired my memory started to go. Brye

Awesome!!! I've been doing a similar cardiac rehab Maintenance program since January. Same Idea, they develop a work out specific to my cardiac needs. It's been great. I'm a lot stronger since I started. I go 3 times a week and love it! Hope they get a good work out lined up for you. It was hard to get my work out in the right order trying to avoid too many position changes. I think that was my biggest challenge. Good luck!! Brye

That's exactly how I started out when I was put on the Beta blocker. I take atenolol. It's been helpful for the tachy spells but I think it also causes my BP to drop too low and causes a lot of fatigue. I would rather have that fatigue though than the fatigue of feeling like I ran a mile just by standing up. Good luck. Hope they find something that works for you!! Brye

I've often wondered that myself. I had 2 concussions playing college basketball close together. I never did recover enough to play again. I wasn't diagnosed with POTS at the time but looking back I think that was the reason I couldn't recover not the concussions. I had exercise intolerance, dizziness, memory problems, hand tremors, fainting spells ... all very similar symptoms. The good news for me was I did recover from the initial bout and it just re-occured 24 years later. I was VERY active during my years between though. Brye

I would like a quarter at least! Can't even keep track of that #. I think I would splurge and maybe ... pay some of my medical bills!! Brye

Very valid points about sharing non cardiac related symptoms! When I asked my cardiologist who says he's treated many POTS patients how to control my hand tremors he just told me his other POTS patients didn't have problems with tremors. I have an internal med doctor I see for my other POTS related symptoms who is very willing to help. Symptoms I have that are somewhat Non cardiac are not something my cardiologist will deal with are my memory problems, tremors, nausea, bladder frequency. I go to my local doctor as well for all my fall injuries and he is very helpful. Most of those I would leave up to my primary doctor I guess. If you determine he does have some POTS experience you may want to ask him if he would recommend a neuro consult eventually. That's next on my list for my EP doctor. If you're a fainter they may want to rule out seizures or other neuro causes as well. I've had seizures ruled out by a neuro doctor but I would LOVE some help with my hand tremor control and memory problems. I've kind of been waiting until my EP completes all the tests and reviews all the results. Good luck! Brye

You should bring your relevant test results and records. Write down a list of questions. Also I would make a list of symptoms you would like help resolving. I always forget to ask these things. I would want to know how many POTS patients he/she has treated. Also you may want to ask if there are other symptoms that don't seem like symptoms a cardiologist would treat if he/she could recommend another specialist in the appropriate. POTS isn't all about HR and BP problems, there are all kinds of other symptoms it can cause. Neurologists often help treat POTS patients as well. Good luck with your appointment and hope you find a good doctor and your treatments are successful!! Brye

Hibernate! I've been staying inside a lot this summer. I was filling the spider man inflatable pool for my kids and I was actually tempted to get in! I broke a sweat sitting on the shaded porch watching them swim!! Brye

I am a fainter. For me It's low BP or Bradycardia from my atenolol. I usually just sit down when I'm at home and it passes. I'm less likely to sit down in a public place and I normally end up paying for it. Last time I passed out in a parking lot and hit my head on the running board of my truck. Next time I'll be sitting down in the middle of the parking lot for sure! The root canal I needed from my loose tooth cost me a small fortune. Hope they can figure out the problem and it doesn't happen too often for you. It's terrifying! Brye

I rarely use mine as well. The last time I fainted though it was in a parking lot and had my car been closer I may have made it! Good luck! It sounds like you got some good advice. Brye

I take atenolol as my beta blocker and that helps greatly! I sometimes wish I could take more for better control of my tremors but I get too bradycardic! Brye

I get similar visual disturbances in both eyes occasionally and was diagnosed with optic migraines. No HA just vision changes. Mine have never lasted more than an hour though. Caffeine speeds up the recovery time for me as well! You should call your doctor just to make sure. They may want to see you sooner if it continues! Brye

So sorry!! I was a nurse as well and there is NO WAY I could go back right now! It's a tough job for a healthy person. Good for you for making it the whole shift. You know about your condition and symptoms and no one can walk in your shoes. You shouldn't have to prove you're feeling badly with HR's. You either are well enough to work or you're not and only you can make that decision. Take care of yourself and try to not worry about what others think. This is easy for me to say from afar and I know it's stressful to switch jobs but have you looked into a less stressful area of nursing? I always thought if I ever had to go back I would switch to a PRN clinic job or substitute as a school nurse maybe. Just a thought. If you can't find a job you can tolerate disability is the next step for sure!!! If you can find a doctor to support that you should stand a good chance!!! I miss being a nurse but I'm so thankful not to have to work right now!! It's been the best thing for me and my family! Take care of yourself!! Brye

WOOO HOOOO! Thanks so much for the update. Hope all continues to go well for you! Keep us posted!!! I haven't let go of my nursing license yet but I'm having a heck of a time keeping up with the continuing education!! Brye

WOW! Very impressive!! I think I may go try a little bit of rum punch! Recipe? Quite an accomplishment! Brye

Hate that feeling, especially at night when I lay down to sleep. It feels like my adrenaline won't shut down. I take Xanax at night to help me fall asleep faster but it doesn't help much with the feeling of an adrenaline rush. No one has been able to give me any good advice on treatments for it! Brye

Quote from one of my ex cardiologists "people your age don't die from HR's in the 30's" Well then ... never mind! (Oh and this was before I was even on the beta blocker) Mine runs in the high 30's at times as well. Several doctors have suggested a pacemaker. I keep holding out hope my POTS will go away and I won't have to take my atenolol anymore. If that happens I won't need a pacemaker. I can tolerate the low HR's much better than the upright tachy moments though. Brye

So would this only help patients with low resting heart rates? Sign me up!! Hope it works well for her!!! Interesting info!!! Brye

Not today but I did back out of the garage without opening it. "DUH!" My husband said "didn't you notice it was a bit dark?" 900$ later we had a whole new garage door. Talk about a DENSE MOMENT!! Brye