Night-time Chest Pain Episodes Continue

[mkoven]

so frustrated. My night-time chest pain episodes continue, multiple times a week. I'm seeing a new cardiologist on Monday. Same sequence of events. I get up to use the bathroom in the middle of the night. With the changes in posiiton, my heart rate zooms up, but no pain. the trouble is when I lie back down. One variation is I first get all sweaty, and then chest pain, radiating down left arm, and then nausea. This will come in waves and is worst lying on my back. If it's really bad or I can't get it to stop, I end up in the er. If it's brief or if I'm just too out of it, or, like last night, if the idea of going to the ER on halloween at 4am, and my insurance now wants me to pay a 400 dollar copay for each er trip, and they've never found anything, I hope it will pass and not do any damage.

Some of my docs have been concerned that this is prinzmetal/variant angina. But I've never shown any ekg changes when I was on an event monitor and my cardiac enzymes have always been normal. Most of my docs don't know how to like the dysautonomia and these symptoms. My new pcp thinks I'm getting some sort of adrenaline surge that's not shutting down one part of an artery (I guess this more typical of prinzmetal?), but clamping down all arteries. I've been tried on a beta-blocker to stop an adrenaline surge, which I didn't tolerate because of trouble breathing, and a calcium-channel blocker, which I didn't toleate from the dilation, and a night-time low-dose nitrate patch, whcih might have been too low to be effective, but was high enough to make me tachy and give me a headache.

My arteries are clear on angiogram, but there is still some fear that if something is spasming, it still could spasm hard enough to cause a heart attack.

so frustrated. I hope we can get to the bottom of this or find some meds to stop it. We briefly thought it was musculoskeletal because I do have tight chest muscles, but the sweating, nausea, and radiation don't fit.

Sounds like other people have different types of chest pain, but nothing quite like this???

[Guest Sandy Sims]

Again, I KNOW i'm running this into the ground.

BUT~~~

I keep seeing you guys post ALL the symptoms I had--doing ALL the things I did--getting the same "there's nothing to stop this" doctors results I did. Taking drugs like beta blockers that just make it worse. (many Dys drugs affect blood sugar)

So I keep posting this--in case it will help you as it did me.

I had these EXACT symptoms--terrifying! Went to the ER over and over--spent TONS--knew I would die. And yet tests showed nothing other than MVP and on a few occassions some slightly off EKG readings. Yet the pain was BAD! The adrenal surges came almost EVERY night for TWO YEARS!

Finally the right doc ran the right test. A glucose tolerance test WITH insulin levels at all blood draws. And there it was. I was hypogylcemic and my adrenals kicked in every night to pull up my blood sugar--causing ALL my symptoms. My fasting glucose numbers were normal by the end of a fast due to adrenal surge in play--insulin too--but NOT WHEN I DRANK GLUCOSE FOR THE TEST OR ATE FOOD!

He put me on a small dose of metformin--500mg at night--and gave me diet plans for this. And BOOM! Within a few days pain stopped!! I could sleep! MY rapid pulse and low BP came back to normal!

Please have this test. It's a simple blood test any GP can order--with a typical 24 hour time to know the results--and an inexpensive non narcotic or steriod drug Metformin that fixes it pretty quickly.

Google reactive hypoglycemia and look at the symptoms. This could be you too.

<getting off soapbox now>

Hope this helps,

XOXOXOX

Sandy

[mkoven]

I had a normal 6hr gtt in January, done by an endo specialized in dys. I wouldn't expect this to change in the course of 6mos, or should I?

[willows]

Having just read your post on night time chest pain I know exactly how you feel because here I am up again because of cit on average I get a low level one( pain at 4-10) 4-6 times a week night times and touch wood I haven't had a day time bout for over 5 years now .

OMG these are by far the worst and I really dread the day I have another one . I can feel them coming sometimes , I call it a 'shot across the bough ' as I feel this slight hick-up in my chest and a sort of slight pain almost stinging ( but not )

I've also been to the ER many times after the pain has reached 9/10 and I've been grey , sweating , dizzy and about to throw up ...........with pain in centre of chest into the middle of my back with it radiating into my neck , left shoulder , down my arm and into my hand .

By the time the ambulance gets to us (35 minutes) and I've been rushed to hospital ( about an hour in total ) my heart has slightly levelled out as the excitment has boosted it again .

My problems is quite simple , I have a hole in the back of my heart that leaks , two valves that leak and I'm bradycardic with a day time heart beat of under 60 most of the time, at night when I lay down it drops to below 40 and even below 30 ( which is heart block ) and this is when all the pain starts , as you have said laying on your back is not a good idea and I dont understand why myself and I've been like this since I was ..............13 years old ( thats 40+ years of it )

I now use a GTN spray to lift my heart beat , but sometimes it just doesn't work and the pain is excruciating , so bad I've actually begged my husband to hit me to knock me out yes , I know that sounds stupid and I dont recommend this to anyone , but its the pain , it is so overwhelming and so bad I can cope with all sorts of pain , which on an everyday basis I do , but this chest pain is something else and I cannot cope and cry holding onto Mark almost tearing at his clothes trying to somehow stop it , its just devastating and I hate it so much when I get an attack . Mark by the way won't dream of knocking me out so I end up almost blacking out with pain and lack of oxygen (just 75% and dropping at times )

I've had so many years of struggling with hospitals and ER's and heart consultants over this and had so many EXCUSES as to why this happens including :

My oxygen level is very low because I was :........ holding my breath !!!!!!!!

My heart beat was slow because I was :..........Holding my breath to make it slow down !!!!!

And I have also been told that my heart beat and oxygen levels are low because I'm hyperventilating ( breathing fast and short) which accounts for my conditions and that I should stop doing this as its silly for someone of my age !!!!!!!!!............even though I've been trying to talk to the ambulance men and they have said 'shhhhhh , just relax and dont speak, we'll have this sorted in no time ' and they have reading of all my low heart beat and oxygen levels on paper print outs from the machines I'm hooked up to

Its almost as if the cardiologist are afraid to actually say ' you have heart problems' and I think I know why ! Many years ago when I had my second child I was not treated correctly and afterbirth was left in me with terrible results ( I nearly died) .One of the problem was I had heart failure and then a heart attack and ever since then they have tried to say that this didnt happen ..............er even though its written in my medical file in black and white !!!!!

My own GP keeps year after year of my pain and suffering asking them , even begging them to give me a pacemaker but do they .......NO and so I get attack after attack and go into hospital and guess what ?????

The staff on the ward now turn my monitors off as they get sick and tired ( I actually heard them say this once ) of having to lower the alarms because my heart is beating so low they keep going off

So that tells you something about the sense of the Uk's cardiology wards and the help that they want to give to someone like myself who has POTS and there total lack of understanding and care ........................my husband has tried so many times to tell them but its as if they think my husband , son , ambulance men and myself are all mental and lying about my condition , I feel so sorry for them in away because if I'm treated like this what hope is there for others who get POTS in my country and in my area of Devon and Cornwall .

I will be thinking of you , keep at it and keep pushing for help and hopefully someone will actually listen to you

all my love and hugs Ami .xxxxxxxxxxxx

[mkoven]

Thanks, Ami. sounds like you indeed have quite the history and solid medical reasons for the pain.

My episodes dton't quite "fit." Structurally (on echo and mri), my heart looks more or less okay, with the exception of a mildly leaky tricuspid valve. Other valves sometimes show trace regurgitation, depending on the day and the reader. To my knowledge no heart attack, despite numerous episodes that sound bad. Normal ekg. Normal ateries on angiogram. Normal enzymes when I've gone in. And thus far, nitroglycerine either doesn't help or makes matters worse. What they can document are my swings in rate, pressure, and symptoms. (I did have an abnormal adenosine thalluim stress test, but given the rest of the results , they now believe it was a false positive, caused by my breast tissue muddying the signal. But it was that test result that led to the angiogram.)

these night-time episodes only started in late July. If I think about what I've changed since then--

switched from plavix to baby aspirin, once my arteries were deemed clear.

upped midodrine from 5mgs 4x a day to 6.25 4x a day

added florinef, starting at .05, now .075.

I don't know if any of those subtle med changes could play a role? Maybe the increased midodrine during the day means that when it's totally worn off at night, it throws my system into a tailspin, esp. when I get up and lie back down???? Or the extra fluid from florinef is hard on me? (I no longer really look that puffy from it. Sometimes I can tell my fingers and toes are a little fuller than they would normally be, but no edema anyone else would notice. I haven't even gained weight on florinef.)

So who knows, but I've really had it. I hope this new doctor can help.

[EarthMother]

Do you get the pains during the daytime at all or just mostly at night or lying down? My own experience has been that nighttime pains "chest" pains have been more gastro-intestinal than cardiac in nature.

[mkoven]

Before it was only during the day. Since florinef, only at night. I was on prilosec for a month, and it didn't make a difference.

[ajw4790]

Have you tried sleeping with head of bed tilted or in a recliner etc? Because it sounds like it MAY be due to fluid fluctuations. You have it after going to the bathroom, after having been laying down (blood pooling), so then you get up and could have sudden "fluid rush" or possibly not enough fluid/blood to sustain the activity and position you are in? I am not sure it just seems that it may be fluid related. Because I know you get relief with stockings and it started more when you began taking Florinef.

For the head of bed tilting- you will have to check on how much 4-6 inches? But, the idea is to limit the amount of fluid loss/displaced while supine. So, if tilted it "stays" in your body better. It will likely pool some, but I guess the idea is that is okay because you are sleeping. That way when you get up your body has a larger fluid volume and your kidneys haven't snatched it all up.

Just a theory... Not sure it made much sense, but thought I would share.

[masumeh]

I had recurrent chest pain, especially bad when laying down, for several weeks. I thought it was my MVP or POTS. But it turned out to be my aesophogus (spelling?). That was wierd bc I didn't experience acid reflux, yet it was burning up my tract and causing cardiac pain. I took something that specifically stops asophogeal spasms, and the pain immediately stopped--that's one pill stopped two months of pain! Wow. I didn't even believe the doc that prescribed it, I just thought "what the heck, let's try it anyway...but it's not gonna work". It worked really well, thank God. I do get chest pain with POTS, however. It's difficult to distinguish between the two.

Don't know if this might work for you. But I hope you find your answers soon.

[mkoven]

Wow! What was the name of the drug?

[mkoven]

so my new cardiologist (whom, it turns out I went to high school with!) is proposing a series of steps to see what helps. The first one is to chug a lot of fluid when I first wake up to go to the bathroom, to bump my bp. I can't tell that it helps, but it does make me get up another time to pee.

the next step, as ajw suggested, is sleeping on a wedge. I tried that last night, and not only did it really hurt my back and eds hips, but I got the chest pain still the same.

the only thing that helps is rolling on to my side, which I can only do sometimes because my hips and pelvis are so unstable.

I can then sometimes roll on to my back again later in the night, if it's just a slow roll over. So tiny position changes after my body has totally settled down are all right. But the shifts from lying to standing to sitting to lying, no matter how slowly and gradually I do them, are not okay.

I've taken my bp during these episodes. Nothing remarkable. It seems to increase when I first lie down, and then decrease.

It's gotta be something with how my blood gets redistributed in these different positions.

I think the next trick will be trying some midodrine before bed to see if that decreases pooling.

After that, she may want to lower my florinef, since al;l this started after I added florinef. But I feel SOOOO much better during the day, I'm reluctant. I was a total mess during the day before florinef.

And finally, if that doesn't work, we'll try another calium channel blocker. She is still concerned I'm getting some sort of arterial spasm, even if the trigger is blood pooling.

Sigh.

[firewatcher]

Have you tried dDAVP at night? It should eliminate the need to get up at night to urinate and will keep your volume up without chugging vast quantities of water/gatorade. I know it can be given to children for bedwetting, and when I was on it, I had NO BP fluctuations at all going from supine to standing. It may work better for you than florinef. Just a thought.

[mkoven]

That's a fascinating idea! I'll suggest it!!!

M