AnonymousMay 25, 2007 at 5:46 pm
I’m still farily early in my recovery from GBS and am past the worst part (obviously), but still struggle daily with some heavy residuals. One of them I haven’t seen mentioned here before, but I thought I’d ask about it because if others have experienced something similar, it would be a great relief.
Sometimes I feel a pounding heartbeat for a while. Not a [I]fast [/I]heartbeat, but a [I]pounding [/I]heartbeat. Like, I can feel every beat of my heart very strong and hard, all through my body. My hands feel jittery and the rest of me is jumpy until this goes away… And if I set something on my chest or stomach, the object jumps with every beat. It lasts maybe an hour at a time. I have a home blood pressure monitor, and when I take my BP, it’s not high. So no fast heart rate, no high blood pressure, just a really HARD heartbeat. I kind of felt this way when I was on prednisone for a brief time, but I haven’t taken that for a while now. That’s the only other time I can remember feeling this way.
I just can’t figure out why this is happening! Could it just be yet another wacky aspect of my body getting over the GBS? Has anyone else had this happen to them as a post-GBS symptom?
May 25, 2007 at 7:38 pm
Hi Suzanne, I think the heart is the one thing it does not affect. I do not have gbs or cidp, I take care of Kevie, and I get that same feeling you describe. I was thinking it was nerves, low sugar, maybe even the start of menopause? I’m only 41 so I don’t know if the last thought is possible? I even thought it might be some form of a panic attack. One time I actually thought I was having a heart attack. Could any of these be possible for you? I can only imagine the strtess you face ewvery waking minute. I hope you have a great weekend and try to relax. I am going to try that too! Well, try anyway! Dawn Kevies mom:o
AnonymousMay 25, 2007 at 9:14 pm
Dear Karma Cat
If you think it’s a relief to hear of someone who experiences what you are, just guess at my relief at finding you mentioning this!
Isn’t it spooky when you can actually see your body moving with the heartbeat?
Okay, I’m 50, smoke, drink and sit up way too late.
I am wondering if you are NOT over and above your ideal weight? What I mean is, are you on the slim side?
The easiest answer is to blame it on stress. Course, that becomes a problem when the only thing you know of that is causing you stress, is the pounding heart beat. It’s rather like the heart starts pounding, you become stressed. The doc says, stress caused the pounding heart, and you’re sitting there thinking ‘but I wasn’t sresssed until the heart pounding started” – thing is though, you might well have been – correction your body might well have been under stress, even if you did not know it.,
There’s a good deal to ponder on in ‘Dawn Kevies mom’ post. She gets it, and she has not had GBS.
AnonymousMay 25, 2007 at 11:07 pm
I wasn’t diagnosed till after I started to recover, you can read all my symptoms in a topic called “Could this be GBS” (you even got a mention 🙂 )
When I was at my worst, I could feel my heartbeat like you have described all day every day (I also was having “Missed” beats)
Now I am recovering I still can feel it sometimes, like if lying on my back, or when I go to bed.
My doc says that it can be part of GBS, so I hope she is right
AnonymousMay 26, 2007 at 5:59 am
Suzanne, pounding heart at normal rate is not related to any disease. It is due to anxiety. Unfortunately it is all too easy for us docs to say that irrelevant symptms are due to x,y,z, in our case GBS.
BP has to be very high and pounding is constant, before I went into renal failure due to it, mine was 240/120 and the whole bed rocked.
Beebee, dropped beats are within normal limits and are not due to any disorder, even GBS. GBS is a peripheral neuropathy and very, very rarely effects the autonomic nervous system, when it does it effects the nerve supply to the medium sized arteries this effects the muscle coat of these arteries which in turn alters their diameterand hence BP. DocDavid
AnonymousMay 26, 2007 at 9:03 am
I have experienced the same problem. I have CIDP and the pounding heart appears to have nothing to do with CIDP. I found that if I “rested” for a while the sensation would go away.
I also have/had a problem with atrial fibrillation and fluter. This is an entirely separate issue from CIDP. they are irregular heart rhythms and are usually accompanied by a rapid heart beat. While they are not life threating it can lead to a stroke if not treated. If it continues to be a problem you might want discuss it with your GP.
AnonymousMay 26, 2007 at 9:25 am
I understand you are a doctor, am I right ??
My heart was very slow (always 65 – 70) where my normal resting heart beat has always been closer to 85. I couldn’t get it to go up no matter what I did. One day I psyched myself up for 4 hours to go up and down our stairs twice to try and get it up and it went to 76.
My blood pressure was getting lower and lower, it has always been approx 115/75, and it was down to 82/58.
I had numerous “missed beats” a holter monitor showed 10871 beats over 24 hours with 2981 ectopic heart beats.
Despite the low speed and blood pressure, I could feel my heart “pounding” all the time.
That was up to 12 days ago.
Now heart rate normal, blood pressure 120/78, very infrequent “missed” heart beats, and only occasionally feel it pounding.
I wasn’t officially diagnosed until I started getting better, so no LP.
Could I perhaps have had something else – not GBS ? Do you have any suggestions.
Current symptoms – quite tingly / numb / achy legs – arms and legs made of lead – exhausted from being awake, but that is about all that is left
AnonymousMay 26, 2007 at 11:00 am
I too have that pounding feeling, as you said, not fast but it feels like the heart has gained strength and size and the beat is extremely strong. It is not due to anxiety, and its not the same as when one had done exercise and your heart pounds. Its difficult to describe, its not the ‘norm’, but I know exactly what you are describing. I dont have it often, and have no idea when it started, so I’m pretty used to it. It doesnt really bother me much as it only lasts a few seconds and then is gone. I have never associated it with residuals at all and havent even mentioned it to a doctor, simply because I’ve never thought to do it and I dont think they could understand the feeling.
AnonymousMay 26, 2007 at 1:08 pm
You know, I’m starting to wonder if I’m not experiencing this as a remaining side-effect from the Prednisone I was on for a while. I started out on high doses via IV before being dx with GBS, and then the new neuro was not happy about that when he discovered what I was on. We had to taper the dosage off slowly, so I stayed on decreasing amounts of Prednisone at the same time that I was getting IVIg. One of the side-effects of Prednisone while I was on the higher doses was bad heart palpitations. They felt exactly like my occasional “pounding heartbeats” do now.
I didn’t realize how long steroids stay in your system, but I was reading online that Prednisone can stay in your system for up to a year after taking it. It wasn’t that long ago that I was on the Prednisone, maybe a month and a half. And now that I think about it, my neuro wouldn’t even consider doing another MRI on me until August because of the Prednisone I was taking before. I didn’t ask why, but I assume that means that the Prednisone would still be affecting me in some way for at least a few more months.
If that’s the case, then as the Prednisone continues to leave my system, this little side-effect should diminish. I’m quite sure it’s not anxiety-related, so this might make the most sense.
AnonymousMay 26, 2007 at 9:03 pm
I have been doing a bit of research, as I seem to have experienced a lot of autonomous symptoms that not many people mention, including heart irregularities.
This is a quote from a web page. I am not sure if we are allowed to put links in, but I will and if I am being naughty someone please delete it 🙂
I will quote this passage in case the link gets deleted
It says the autonomous system may be affected then goes on to say
“The autonomous nerves control the inner organs, whose function is normally carried out automatically, such as secretions of hormones, vision, urination, breathing, heart beat etc. These functions may be disrupted, resulting in arrhythmia, unstable blood pressure, blurred or double vision, dizziness, fainting spells, inability to regulate body temperature, difficulty breathing, reduced ability to control the function of the stomach, digestive system and bladder, loss of weight, vomiting after meals, reduced function of various glands, incontinence, impotency etc It may be difficult to urinate and the bladder may feel as if it is not being emptied”
It also says that as the other physical symptoms and sensations (weakness, paralysis, tingling) are so frightening, these autonomous symptoms may actually be overlooked by the patient a lot of the time.
I hope this helps you feel more comfortable about things that may or may not be happening to you. 🙂
AnonymousMay 27, 2007 at 5:14 am
Beebee, I cannot make a specific diagnosis without seeing a patient with all their results. All I can say is that under the circumsances I mentioned before, that pounding heart is not pathologica1. You and your attending physician must reach your diagnosis. Best wishes, DocDavid.
P.S. Yes I have been a doctor for over forty years.
AnonymousMay 28, 2007 at 1:28 pm
I’ve also been experiencing the “racing heart” and “palpitations” that have lasted as long as 7 days straight non stop. I started them 4 days into my diagnosis, which was on 9/1/01. They never stopped completely and were always there. All of the doctors I saw told me that I was just sensitive to my heart beats. Even after “catching” the episodes while I wore a heart monitor. I spent the last 6 years dealing with my heart beating 140+ beats per minute for days after days with no relief. They happened when they wanted to. I could be sleeping, reading a book, taking out the trash, showering, with stress or no stress. Nothing in particular triggered them.
After leaving the AF, with much frustration I turned to the Veterans Adminiatration. I was recently in the hospital for 5 days while they evaluated it throughly and do believe that my GBS was the trigger to a damaged nerve that is sending faulty signals shooting off into my heart. I’m on medication now that seems to have it under control, even though I can feel my heart “trying” to speed up. My blood pressure is naturally low, and my heart rate was also. I’m within normal weight and not obese, I do have a thyroid problem (that came on 1 month post diagnosis of GBS) but those numbers are good.
I guess the point is that if you feel like something isn’t right with you it probably isn’t. I was told that this kind of speeding up and slowing down over an extended period of time can “Wear out” the heart muscle way before it’s time. That is why I take the medication. Ask your doctor to give you the 7 day heart monitor so that you can “catch” the palpitations and he can see them on paper. There is so little study on GBS when it relates to our internal organs, that there is no way that someone can say that it can absolutely be ruled out as the cause.
Listen to your instincts, get it checked out. I’m glad that I did! I can live better than I did before!:)
May 28, 2007 at 11:17 pm
I like the autonomous nerve info. A lot of those problems are things I have seen mentioned in threads.
I had (still have) problems with urination. When I gotta go I gotta go NOW! When I was sick, I couldnt tell if I had to go, and when I tried I had to sit for awhile and let it happen. Same with BMs. Now with that I sometimes have problems going. As if it takes more effort even though it shouldnt. Heart palpitations were more often while I was sick, not so often now in fact almost completely nonexsistent. My digestive system stopped doing its thing when I was sick. I told hubby it felt like my organs were numb and didnt remember how to work. When they “started up” again and I was able to sort of eat some soup, my digestive system was in overdrive and everything flew thru me. I could feel everything working and I swear I could feel the juices being released! Also it was all very noisy. What else….eyes….they didnt always focus properly and when I am tired they still act up. Headaches, we wont even talk about those because afterall, they arent associated with GBS (haha). My throat still goes numb and it feels like I cant swallow…as if I had a big dose of that chloroseptic stuff for sore throats. I can swallow, it just feels like I cant. My mind still gets cloudy (short term memory still is weird!), was very bad when I was sick. I felt like I was drunk and trying to carry on a decent conversation but was far away from my actual self while attempting to do so. Body temperature. Oh man this is a fun one. I am sensitive to temperature changes. If it is “warm” or gets warm, I get really hot and feel as if I will burst into flames. If it is chilly, and in so cal it doesnt get that cold, I am freezing! I bundle up and get under a bunch of blankets. Everyone else in the house is perfectly fine and I am trying to find a happy medium. It is getting better though! I have noticed a difference in how I react now as opposed to a couple of months ago. Trying to explain to an ER nurse that a 99 temp was not normal for me was next to impossible. They dont understand that a persons “normal” temp is 96. Although even that is getting more stable now woohoo!! It is more often 98 than 96 these days. The list goes on. Are these things associated with GBS, I find it hard to accept that they are not if that is what doctors say. Why do we experience them when we get GBS, during GBS, and during recovery? And if our nervous system controls so much (all) of our functions it only makes sense that weird and bizarre things would occur and we would experience all sorts of odd things. I believe there is still so much that needs to be learned about GBS. There should be a book—like What To Expect When You Are Expecting only What to Expect When you HAve GBS— or something with everything that people have experienced so that others going thru it would be able to read it and realize they are not nuts. Even obscure things, things that may not seem like a big deal or that it is even “associated” with GBS. Does that make sense? I know Dr Parry has a book out (or more than one?) does it contain real life stories and experiences? Anyhow sorry to ramble. Not even sure any of this makes sense.
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