I saw a Neurologist at a teaching hospital a couple days ago about my heart racing and he said that he thinks it is due to Peripheral Nerve Hyperexcitability. I started on Neurontin 100mg last night. He said it could cause the chest pain that I have at night along with the tingling in my hands and pain between my shoulders and this may slow the nerve activity down. I had more pain in my chest last night than I ever have and the pain is so sharp at times. I saw a cardiologist last week and he said that my heart was super healthy. My heart feels so weak after I work and stand all day and the symptoms are worse: heart racing in the evening followed by shortness of breath, heaviness sometimes and now pain especially at night when I lie down. Yesterday I worked and I had more chest pain than I ever and this morning the chest pains are still coming and going. I'm currently wearing a heart monitor which has so far registered the fast beats but normal rhythm apparently. I've never had problems with my heart. Has anyone experienced this after having GBS or a similar attack?
The Gabapentin is working!
I had increased heart rate in my acute phase, now I only get it rarely. I had my acute symptoms about 3 months ago, and now i'm back to work, but still get tired if I walk too much or exert myself. I noticed if I drink coffee I get a mini relapse that usually last several hours. I think too, any stress can affect the peripheral nervous system. I'm not taking any medications like you, but if it helps you you should take it. You said you feel more symptoms after work. Do you feel better on the weekends or on your days off?
I feel better on the weekends and on my days off, whenever I'm not over exerting. I hope I will be over this re-flare soon!
Yes!! And what a joke when all Drs had no idea how or even that the heart involvement was connected to GBS. My neurologist even dared to tell me that the bladder and autonomic temperature and heart was not related as he had a puzzled look on his face. He’s an older man and I guess behind on more recent illnesses (so to call it). I had the same issues laying down and the whole heart racing etc… and always wondered if it’s POTS (look it up). Anyhow, I also did the Holter monitor due to nurses I work with telling me my heart was throwing PVCs (arrhythmia so… not good!) and an echo and chemical stress test on heart and a CT guided angiogram. Conclusion, healthy heart too… Well of course! Duh! I was in the best shape of my life when the GBS struck. but the biggest joke was that when I needed it all done wasn’t when it was done. It was 9 months later. I’ve learned Drs are supposed to educate their patients, but sometimes the truth is, they don’t. So, this site is awesome! I hope u get your answers. I believe the IVIG is what took away my heart issues. I believe it’s all a part of how GBS effects the autonomic nervous system. I found out that the nerves do solo much… The cranial nerve that comes out of the brain can effect the eyes, tongue, and ears. The autonomic nervous system also includes nerves that control the tinies glands (part of the endocrine system that has lots of nodes that secrete fluids/hormones/etc). I was completely dry during my worst three months, never a sniffle from my nose ever I noticed, too. It’s all interconnected. The nerves do sooooo much. Hope this helps . It may not be completely accurate for u but i hope at least one thing I said helped … My months and months of studying paid off for me I know.
Hi Kathy! Thank you so much for your reply! I've been struggling. Fortunately, the low dose of Gabapentin at night is helping but it hasn't stopped anything. I'm still wearing a Holter monitor (14 LONG days so far), that shows tachycardia but no heart disease so I'm okay in the eyes of the heart doctor. I am having an ECHO tomorrow but he thinks it will be normal. I also got my Gluten test back today and it was normal. I run around chasing all of these symptoms but haven't had anyone even trying put it together. I've always read that you need a good team of doctors with this. This is what I am lacking but I'm currently seeking doctors who are familiar with this. There was a point when it first hit when I frantically searched for help. That was a fail and I was too sick to do that effectively. I settled. When my body finally recovered by itself over months of struggling, I thought it didn't matter any more. With this reflare and what I know are autonomic problems which I know now I experienced before, I have been on a mission because if you are not officially diagnosed then it makes it difficult to get other symptoms cared for correctly. My heart is healthy so they sent me on my way but I was still waking up 4 or 5 times a night with a racing heart that I couldn't slow down no matter how much I meditated or relaxed. And something has been wrong with my digestive tract and it's not gluten. But this didn't just happen over night. I felt symptoms leading up to this for weeks, even months. I had hard twitching that moved again through all of the previous nerves peripheral and cranial to my torso this time. After the twitching, came weakness and dysfunction. I have been dry too. They kept saying I was probably not drinking enough but I was so I'm glad to know that this may be a part. Things seem to be getting better but my body feels wrecked again. I was in great shape before so I feel this clouds the whole issue even though it has probably helped me recover. I'm actually not nervous about it any more because I know it's going to happen to me and I'm not going to get much help for now. But I will find an answer and I'm going to keep trying this time. Thanks, Kathy, it helps so much to be able to relate to someone and gain more understanding on this whole thing. I'm on a mission for positives and cutting out negatives.
I think the intestinal problem is called parastalsys, where the nerves are not able to inner ate the intestines, which makes it so the intestines are not able to squeeze to their full potential, much like our motor (leg, arm, hand,…) muscles. Yes, it’s an autonomic (automatic) function of the body that GBS causes to fail… From demyelination??
Oops… “Innervate” I meant… (meaning the nerves can’t get their messages along their path because the nerves have been eaten up by white blood cells). Sorry if u know all of this.
I’m learning and forgive me if I’m wrong
Also, u may call if u want any time. I also would love to talk and hear your story
Hi, I run the support group in Queensland Australia - and I had GBS many years ago. I too had the racing heart problem, and they could never seem to find anything wrong. Sometimes it would feel like it was beating out of my chest. It has just faded away over the years without any treatment, and it rarely ever happens any more. So I would give it time. Like the rest of GBS symptoms, I think it just takes a long time to heal properly. Hope you feel better!
Thanks for the reply. This last month has been a tough one. It's so difficult when the symptoms hit so hard and seem so serious. You never know if it will back off or get worse. It's nice to know that others have experienced this and it got better. Last night was a good night but the two before it were pretty bad. I even felt like I had resistance with my lungs when I was breathing in night before last. I don't even have that today thank goodness! The racing heart at night does seem to be getting better. I have had pain in my chest with it but that has gone from a stabbing pain to more of an ache in my chest and it's been less and less and I have more pain free time. I wonder if anyone experienced pain with their racing heart. Again, my EKG is normal, the Holter monitor shows the rapid heart beat but no heart disease or abnormal rhythms, and they suspect the ECHO will also be normal. Of course, my leg and hand strength are actually better. This whole heart thing really through me off. Thanks for all the support!
Why does everything seem so much worse at night? Does anyone else have this problem?
Hi, I run the GBS/CIDP Support Group in Queensland, Australia. Ive had GBS myself and helped many, many patients get through the toughest parts of GBS. When the nerves are 'firing up' especially at night, Ive found that its a great sign. Its when all the healing is occurring and its your body working overtime to try and heal those nerve coatings. It can be extremely irritating, i know, and you will have some exceptionally weird sensations that are hard to describe, but its a good thing! It will eventually fade and you will not notice it any more. I tell all GBS patients that they have to 'GROW PATIENCE' - unfortunately it takes quite a bit of time for the myelin coating to regrow, it grows very slowly. But the good news is that it does grow back, and most patients get back to 95%+ of there previous health.
Ive also noticed alot of comments from people that are trying to do the same sort of exercise or sporting activities they were doing pre-GBS. Just remember that your body is working extremely hard to get well, when you push your body too hard, its just overloading the system and the system wants to 'shut down'. You have to take it very easy for the 1st year post GBS. It is very important to get some exercise, but only gentle exercise. Hydrotherapy and water exercises are great as it takes some of your body weight off while you exercise. You will have to learn what your limits are - I found that a bit difficult and always tried to push past it - but I always regretted it the next day as I'd feel worse. So give yourself and your body a break, and just do little bits at a time, whatever you do dont push yourself too hard.
If anyone has any other questions, please feel free to contact me on my website www.gbsqld.com or on ■■■■■■■■■■■■■■■■■■■■■■■ anytime.
Why does everything seem so much worse at night? Does anyone else have this problem?
Thanks for the great information! Just wondered at about a year out if it's still normal to overdo it then struggle with excessive twitching and nervousness inside. I was feeling more normal again then forgot a dose of Gabapentin and everything reved back up. Is this normal for myelin to do this? I wonder if it's chronic for me or if it's just GBS in recovery. I'm definitely stronger and had been doing so much more but I'm right at a year. Does it make anyone else feel anxious when they are so shaky inside? I just hate that feeling. It really sidelines me when I have too many symptoms and I'm trying so hard to fit in with the people around me who want me to be all better.
My husband has Autonomic Nerve Dysfunction from another illness and spent years trying to get it diagnosed - finally got into one of the few clinics in the country that can diagnose. This was before I got my GB. I watched him go through all the tests, and at the end of it the verdict was, yes, you have it. The answer to what can I do about it was - nothing!
So after my GB I recognized that not only did I have the muscle problems from the GB but also the autonomic ones - my digestive system, heat regulating, heart, stomach etc were all messed up - and still are 10 months out. If the doctors don't find anything wrong - it means the nerves and if they did acknowledge that they would say they couldn't do anything anyway.
I appreciate you saying that people around you want you to be better. It really is hard, I know they mean well, but the more I do, the more I pay for it.