Can't sleep, heart going wacko!

[Gena]

Okay, it's in the wee hours of the morning and I can't sleep. My heart is pounding in my chest - not terribly fast but just very forceful and this is really annoying. For the past 2 weeks I've been unable to get a good night sleep because my heart rate has been all over the place and I'm having so many arrythmias at night and lots of chest pain. I don't know whether the heart problems are causing my intense anxiety at night or if my anxiety is aggrevating the heart problems. Probably a little of both!

I'm so mad at myself because I can't even manage to even use any of my guided meditation/relaxation techniques that normally work during the day. It's like the more I try to focus on relaxing the more tense I get! My whole circadian rhythm is really thrown off now, because I'm really tired during the day and become a live wire at night. I try to relax before bed and do all the standard rituals to wind down, but nothing helps. Tonight when I went to bed, my HR was at 45 and then every time I started to doze off I wake up with this fear that it's going to stop. Next, it went into an arrhythmia, then went crazy tachy on me and then came down to about 65 and beating very forcefully.AAAARgh! After 2 weeks of sliding down in the POTS hole, I start to wonder how in the world I can live every day like this and make it into old age??

I know my symptoms are nothing new and even mild compared to some who post here. I feel guilty for even complaining, but the heart thing just scares the crap out of me to be quite honest. I dread trying to go to sleep at night and can't get out of this pattern. I have an appt. with my general doc on Monday and am going to ask him for another holter monitor and a 24-hr BP monitor to see if they can determine what kind of arrhythmias are going on and if it's anything I need to be concerened about. No one wants to put me on beta blockers b/c my BP is chronically low.(Well I just took a half of Xanax, so maybe I'll be able to drift off to LaLa land soon? Thanks for letting me vent!

[Nicole's Mom]

Gene,

(edit: This is a blend answer to this post and your Klonapin question post) First of all you should never feel guilty venting about what you are going through because some have more problems than you. This thing that happens to you is of concern to you and you need advice and have every right to ask questions.

I'll tell you why Nicole was taking Klonapin. She was using 1 mg of Klonapin 3x per day when she first had this relapse within a relapse. She was highly adrenaline-y and felt wired to the hilt all the time. It helped to calm down her ANS as she couldn't stand that feeling like she drank 600 cups of coffee. She did not have any side effects from it. I don't think she uses it so much now because the adrenaline-y thing has improved a great deal and she doesn't really need it like she did. I think she uses small doses as needed.

About the crazy arrythmias/ crazy tachy- whenever this has happened to Nicole - like if she was awakened with such a thing - I mean like really, really fast beating so that she couldn't even count her pulse- the first thing (learned from experience) that was suspected was low potassium and in her case a blood test would confirm- not to say this is true for everyone. Upping the potassium helped relieve this problem instantly almost.

Also I'm wondering if when you wake up with the arrythmia and then on top of it your heart begins to pound - I'm wondering if some panic about the situation is involved. That could make your heart pound. You were wondering that yourself - if anxiety might be aggrevating the problem. It seems like a good idea to check with your doc and do the holter just to gain some knowledge about what your heart is doing while you sleep. Then you can find out if your heart rate stays at 45-65 or if it drops or not. If it doesn't drop while you are sleeping like you are afraid it might do then that particular fear will be alleviated and you can put it behind you and go to sleep without that worry hanging over you. Meanwhile- you could just take a smidge of the Klonapin to start off with to see if it's workable for your system. If okay- you can smidge your way up to where you'd like to be.

Take care,

Beverly

[Guest tearose]

Hi Gena, I can relate! I was just going back to bed after posting just as you began...sorry, I would have commiserated with you...hope you finally got back to sleep.

I'm glad you shared these concerns, don't ever compare your problems to someone else's. Your symptoms are unique to you and your body. What may be major in one person may be manageable to someone else. We don't judge here, we just deal with things!!!! Now for my thoughts...

I can be sound asleep and wake up from a nightmare and have these symptoms. I can be sleep deprived, which happens a lot to me, and have these symptoms. I have had these symptoms from being premenstrual, and yes, for two weeks!

The concern I had was very much like you said. Was my heart rate going too low, why was I so out of rhythm? I did the 24 hr. holter and you should too. I do think we can get our symptoms get on a "faster" down hill track when we are in a weakened, tired, ill or hormonal state. Get as much information as you can!!!

Although I do have some very low heart rates, and I many pvc's they were all within normal limits. The treatment my doc said is usually; beta-blockers however, this can mean in someone with my problems I would probably be needing a pacemaker shortly afterwards. I personally had so much trouble with a temporary PICC line for 6 weeks, that I believe my body would reject an implanted pacemaker. I have chosen to behavior modify and my symptoms usually pass in a few days or weeks. It is one of the hardest things for me to manage but I seem to find my way. I have to take a daily nap- three naps a day after a few nights like those. I crank up my electrolytes during the day and cut out a lot of activities to be sure I don't go back to the potshole. Once I learned how to manage, I did better. Just like last night, I woke up, had some tea, sat in the cozy chair for a bit, answered a post, watched an infomercial and when I felt soothed again, climbed back into bed. Now I'm here and counting my energy points for the day while drinking my high octane coffee and milk. I survived without falling into the pit!

Just remember knowledge is power and once you know what you have to deal with you will do so! We'll be here for you...even at the wee hours of the mornin' zzzz, yawn, smiles, tearose

[MightyMouse]

Don't feel guilty for venting--it's just your turn this time. That's why this forum is here.

I hope the xanax kicked in and you got some Zzzzzz's. Nina

[yogini]

Gena,

Sorry you havent' been getting much sleep. And don't feel guilty for venting on the board. The symptoms you are having are truly scary. For me I definitely still panic every time I get severe tachycardia, but I think it's only natural to get freaked out.

You'd mentioned a week or two ago that you were under a lot of stress at work, and I'm wondering whether this could also be making your symptoms worse? If so, I hope things calm down for you.

My tachycardia seems to always be linked to low BP. When my BP comes up, I don't really get any tachycardia. (My problem is that I can't seem to bring it high enough without it being too high, but that's a different story) I know everyone is different, but have you tried taking anything to try and bring up your BP more? I am not sure if you have tried high salt (10-15g/day), florinef and/or midodrine, but it may be worth talking to your doctor about these.

-Rita

[Gena]

Hi Everyone,

Gosh you guys are going to make me cry! I got all weepy reading your posts of encouraging words and excellent advice. (And yes I'm hormonal and very exhausted right now...as a side note ...2 weeks before my period I do get some PMS symptoms and a little water/weight gain, but that's always seemed to help me in the past and has never aggrevated my symptoms like it does for others).

Nina - after taking the Xanax, I did manage to get a few hours of sleep in fits and starts. Not a very deep sleep, but it's something.

Tearose - you mentioned nightmares....The last two weeks I've had a lot of nightmares. I get them when my POTS symptoms flare up. And of course the nightmares contribute to my tachy as well. My work stress was pretty high but it's tapered off in the last week. I've gotten to where I can block out worries about work if I need to. I just pretend to flip the "OFF" switch in that section of my brain so I don't worry about any job related stuff. But then on days when I don't go in until late or don't get a lot done b/c of the POTs, I start to feel guilty and then I bring the pressure back on myself. What a crazy web I weave, huh??

It's soooo comforting to hear your similar stories and words of support.

Beverly - I am definitely going to take a Klonopin tonight before bed, or maybe even a smidge this afternoon if I feel like taking a nap. Thanks for the insight about Nicole and the potassium level thing. I was wondering about the potassium, so I'll have that checked tomorrow at the doc's office.

Rita - I have a RX for floinef, but my cardio at Mayo said to hold off from filling it yet. I was doing so well and keeping my BP at a reasonable level without meds until this last little crash. I think he wants to look at my BP readings over a 24 -hr period first. I will work on getting my electrolytes back up and taking it easy today. Although I am going to decorate the Christmas tree!

Tearose - Sorry I missed you in the wee hours of the a.m. I noticed you had just been on the board before me. Yes, we could have had a pity party together!

[blackwolf]

Dear Gena,

Just to put in my 1/2 cents worth. I have low (sometimes very low 78/46) Bp and I still take a beta blocker (Toprol XL, 50 mgs once a day). In my case, the benefits outway the risks. Personally, I would rather have my Bp a little lower and my Hr a little more under control. I also take Norpace (disopyromide) 150 mg twice a day and ProAmatin (5 mg) as needed up to 40 mgs a day. For the proamatine, I take 5 mgs every 2 to 4 hours as needed for activity. I tried 10 mgs, 4 times a day and by time 3 hours were up, I didn't have the Bp to do anything except faint. I am still in "discussion" with my cardio as to trying the mestinon(sp?) and am waiting on my latest blood draw to see if my liver enzymes have gone up again.

I hope you find something that helps you relax and get some good rest.

Blackwolf

[DancingLight]

hello gena,

did you try the klonopin last night? how did it go?

i just wanted to let you know that i feel your pain! your desription was so good...about trying to do the meditation cds and then feeling like it just makes it all worse! that is what i do at night. then, i make it worse by getting mad at myself too that i 'can't meditate' and am not a more 'skilled meditator'...that i 'should be able to calm myself down'! sometimes, like you, when i focus on my breath it gets worse!

also, i almost constantly have the sensation of a forcefully beating heart, especially when i am more symptomatic. i am not sure that i know what it feels like to NOT feel my heart pounding in my chest. i can feel it along the whole left side, middle and upper chest. sometimes it is VERY VERY strong. and it has nothing to do with the speed of my hr, which is controlled by a beta-blocker. well, i guess, at least i know it's still working! it feels like it is working so hard though! like, my poor little heart, it must be so tired!

hope you got some sleep. i'm not sleeping so hot these days either. i've been up in the middle of the night doing word finds, reading the paper, you know, all that good stuff. ugh! i hate it! up at night, exhausted and good for nothing during the day! aaargh!

okay, this turned in to a vent on my part. oops! sorry!

later alligator!

emily

[Gena]

also, i almost constantly have the sensation of a forcefully beating heart, especially when i am more symptomatic. i am not sure that i know what it feels like to NOT feel my heart pounding in my chest. i can feel it along the whole left side, middle and upper chest. sometimes it is VERY VERY strong. and it has nothing to do with the speed of my hr, which is controlled by a beta-blocker. well, i guess, at least i know it's still working! it feels like it is working so hard though! like, my poor little heart, it must be so tired!

<{POST_SNAPBACK}>

Hi Em,

Yes I slept better last night with the Klonopin. Thanks for checking! I went to sleep around 11, but I was up from 3 to 4 a.m. feeling very energized. Not tachy, but just a steady, forceful HR in the 70s, which is kind of high for me. But the wired feeling eventually subsided and I slept pretty soundly from about 4:30 - 9 a.m. Thank goodness my boss is so understanding and I can go into work late or work from home when necessary.

I am going to up dosage on Klonopin a smidge tonight to see if it will get me through the night. Regarding your quote above, that's exactly how I feel almost every day. I wonder if my poor heart will last me into old age? Thank God it's a strong muscle! I remember mentioning this to a doctor one time, I showed him that you could see me my chest pounding with my heart beat and also watch the pulse point in my abdomen beating very hard. I explained to him that sometime it beats so hard/forceful and doesn't feel normal. Ya know what he said?? He said well, you're so skinny of course you're going to feel your heart beat more than most people do. Put on some weight and you'll be fine." (grrrr, I wanted to slap him! ) Hope your sleepless nights get better soon. I never though about doing word finds in the middle of the night, maybe I'll try that! Thanks for the idea.

[DancingLight]

gena,

that comment from the doctor is INFURIATING! (did i spell that right) grrrrr!

i love word finds for the middle of the night...they don't take a lot of concentration but still distract me. and i can do them lying on my belly propped up on my elbows.

klonopin is often used to help with sleep....so i do hope that it starts to give you some more consistent nights' sleep.

goodnight for me too!

emily

[Radha]

i do word finds too, cant do crossword puzzles, they take too much concentration and with all the brain fog, they just frustrate me! yes i also get frustrated when trying to meditate, coz when i focus on my breath, i automatically breathe too deeply and that makes me tacky, and i can relate to reversed sleep rhythms, being too exhausted to sleep and then feeling miserable during the day, the more you lose sleep the harder it is to fall asleep, its like i get more and more wired! and being able to think more clearly in the middle of the nite than in the morning makes life very hard! hope all of you get some sleep tonight, just wanted to add that i understand and that everyone should feel free to express any thoughts and concerns,

radha

[ramakentesh]

i try to take some valerian or beat blocker to calm myself down when i feel so 'wired and tired.'