Plummeting Heart Rate

Has anyone had experience with a plummeting heart rate? My brother-in-law Jim has been fighting Guillian Barre for almost 70 days! He was paralized from neck down. He has made very little progress but we are happy with small gains. The biggest problem we are dealing with at present is his heart rate keeps dropping, sometimes to zero! Doctor says it is disconnect because of the disease. It is very stressful. It has happened 8 times in one day. So far shaking him or dropping his head has brought him back without using the paddles but we have come very close. Dr says his heart is pretty strong, but how long will that last? Trying times! If you have experience with this please share!

Fluctuations in heart rate and blood pressure are common with GBS. With me they didn't know if they should give me meds to increase or decrease, because it went both directions, frequently. Jim's sounds like it may be worse than most, however, so we can only hope that they are monitoring him closely. (I'm sure they are -- is he still in ICU?) It took me weeks in the rehap center to wean me off the various meds they had me on while I was still there in the ICU.

Good luck, and keep us posted!

My father-in-law's partner has had bouts of very low blood pressure - to the point where we were called and told to come in immediately because they felt that death was imminent. I am not sure if this is the same thing or not.

He was paralyzed almost completely, and on a ventilator. I think that the hospital was still having problems with sudden extreme drops in blood pressure almost 2 months. Since then things have gotten better and this has not been a problem.

We are still relatively early in the recovery phase - we are now at 4 months with the first 2 in ICU, and the next two in a rehabilitation ward in the hospital waiting until he is well enough to go to an independent rehabilitation hospital.

I hope this is of some help to you.

I had a dual ICD (Pacemaker and Defibrillator) implanted this year because of what you are describing.Obviously I have done okay. A discussion with a cardiologist is in order regarding his condition but plan to see more than one. If I didn't seek out a second cardiologist, I wouldn't be here today.

While my son was in ICU and intubated, both his heart rate and his blood pressure were absolutely out of control. The numbers would go incredibly high and low, often only minutes apart. The doctors and nurses were constantly changing the medications each time the numbers went too far one way or the other. I think the rapid changes lasted about 4 or 5 days. They were terrifying, but the doctors explained this often happens in GBS because the nervous system controls everything, including the heart. All they can do is try to minimize the fluctuation until the spinal cord starts to heal. His numbers were more stable after that first four or five days.

He had additional episodes - although much less intense - once he started to become mobile again. It took a while for him to be able to sit up without setting off the alarms, and then when he started walking it happened again for a few days. In his case, we had to monitor his heart rate and blood pressure with any physical activity for about 6 months. He has been fine since then. I guess sometimes the system never really stabilizes and permanent devices are needed, but we are lucky because he recovered pretty much completely.

Hang in there!

When I was 58, I was diagnosed with high blood pressure. It was so bad, I could not even complete a 3 minute stress test - it shot through the roof after 1 minute of hard walking. The gave me medications and my bp was under control.

When I was 72, I was diagnosed with GBS - my blood pressure started registering low as I lay there in my ICU bed. They stopped my medications. I am now 75 and I have normal blood pressure and take no medications to keep it under control.

I do not recommend contracting GBS to lower blood pressure - but -- it is the only good result that I can attribute to GBS.

I dont want to disturb the flow of this important thread.

Just wanted to say how great to hear of someone who found such a valuable advantage from this nasty thing - brilliant, what a great story!

Thanks everyone! He is out of ICU at the hospital but in a LTAC facility. I am hoping some of the progress I am hearing from all of you happens for us soon! This heart and blood pressure problem is tough on everyone! Thanks for sharing, seems what we are dealing wth is somewhat normal for GBS!

Great to hear that, Ms.Amuse! Going from the ICU to a less-intesive facility is a big step in recovery. You should start seeing improvment from here.


I'm praying for your family and i hope he has stabilized and improved. I'm curious, did they send home in this condition or is he still hospitalized?

Prayers, lisa.

Yes it happened to me ten yrs ago. ive had miller-fisher variant of GBS and I too had plummeting heart rates for a week or two. its king of fuzzy, because of all the meds and the GBS. its very, very stressful I know. I don't know how long it will last everyone is different. but from everything I have read and ive read so very much over the last ten years that yes, this happens with many GBS patients. im not sugar coat it for you because im just not that way. I can tell you , it will become less and less but it may take time. It seems to me , with my own experiences that I got things back so slow that I didn't know it was back till I did something. example, my daughter went to hold my hand about two years after I got sick and I said , your hand is cold lovebug and she said ya, and then I looked and her and her at me and we just started to cry because I had lost it for so long and then got it back so slow. there is hope. IT WILL STOP. I just don't know when either. hang in there, its a long, slow journey, but it does get better. stay strong my new friend.