Internal vibration with "nerve firing"

Posted by brayimee @brayimee, Aug 2, 2020

Hello everyone! I am so very happy to have found MayoClinic discussion boards.

My doctors are becoming very stumped on my case and I am becoming more hopeless as to them finding the issue. I am a 41 one year old mother of 5 and was incredibly active with weight lifting, HIIT workouts, very active in my home and with my kids. One day in early April, I just stopped working. This has taken a huge toll on me and my family as I am resting 90% of the day as to stay comfortable.

my story is long, so I will shorten it for a quick read. about 5 months ago, the left side of my body decided to cause me major issues. I feel like it completely shut down. I get terrible internal vibrations and when they stop, I feel this strange release and I get different nerve pains in my left side and right glute. Following these "episodes" my legs get so terribly weak (sometimes overall weakness), I feel like I am going to fall and my bowel and bladder continually become disrupted. I started to monitor my pulse during these episode and see that much of the time they work together somehow.
**An example: I will go up my stairs and my heart rate will Increase to 150 and I will notice I am also having an internal vibration. When it stops, I feel this flow through certain nerves, my legs get very heavy and weak, I have had numbness/tingling, and sometimes I get an urgent need to urinate or I start feeling my Bowels moving and making noises. I told many doctors I feel like something is misfiring, pinching nerves or causing vascular issues, but no one can find anything. I feel the best when I am laying down on my back and just resting. I use tennis balls along my spine to try and help pass gas (I feel like my intestines shut down constantly). Many times when I am just resting, my pulse will climb and I will start feeling all the nerves sensations and weakness setting in. The vibrations happen all day and wake me up in the night even on medication. Its a continuous cycle all day everyday and it's so very odd. I admit it gets me down going from incredibly fit and healthy to laying in bed, having bowel issues, bladder issues and very weak legs.

I'm looking to connect with those of you who have any suggestions or knowledge on my particular issue.

I had a battery of tests thus far : 2 CTS with contrast, Blood work, urinalysis, Thoracic MRI, Brain MRI (Pending results), ultrasound, HIDA scan, wore a heart monitor for 2 weeks, ECHO, 2 EKGs, Endoscopy, Multiple X-rays, Lumbar MRI (pending), I am in PT and seeing a Chiropractor, vaginal ultrasound. I am sure I am missing something, but I have been scanned pretty thoroughly.

Findings: 2 hemangiomas T1 & T11( where I get back pain), PACs, SVTs (Never have had heart issues), bochdalek hernia ( 1st CT, 2nd CT didn't show).

Specialists/Doctors: Cardiologist, GI, Neurologist, OBGYN, Primary care doctor, PMR doctor, Physical therapist, Chirop

Thank you for reading!!

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

@brayimee

I am very much ready to seek help with Mayo Clinic or other teaching hospitals such as UofM.
I have read about essential tremors before and the only thing I do not see is external shaking. It's all inside. I will look on the connect discussion and see what other how other peoples symptoms associated with mine 🙂
Thank you for your reply, I'm looking for any and all help.

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Did you figure out what this is.

I have strong vibrations in my body and send squeezing energy up my neck and head.

It's awful.

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@wesforgione

Did you figure out what this is.

I have strong vibrations in my body and send squeezing energy up my neck and head.

It's awful.

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Hi @wesforgione, welcome to Connect. Sorry about your symptoms. I know how frustrating those feelings can be. Have they recently began or long term?

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Hi @brayimee

That’s quite a story and one I’m sorry you have to live with. My first thought after reading that is myasthenia gravis that gets worse with physical activity and improves with rest. Have you been tested for that? Lab tests. Query some of your other symptoms together with myasthenia gravis and it seems they all could be plausible. As someone who has a lot of weird stuff that has been diagnosed I can also tell you that you can have uncommon symptoms you may not see listed. There are always outliers in science. Anyway, just one more thing your neurologist could check for. A neuromuscular neurologist may be more up to speed on that. There are treatments for MG. Whatever you have, I hope they figure it out and can help you. I also didn’t see any mention that you had EMG or NCS testing which is also done by a neurologist to test for muscle and nerve issues. If positive that could shed some light. Since your symptoms come and go it might be hit and miss to catch something with those two tests though. Just throwing out ideas. Keep us posted. Prayers for you. Zebra

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@brayimee

Hmmmm! I did just now read about it. I do have some symptoms. I will see if my doctor wants to take a look, he hasn't been open to many of my suggestions.
I was sick most of January this year and was put on antibiotic doxycycline in February. That is the only thing I can think of. I woke up end of March with upper left abdomen pain that wrapped around to flank. It lasted a few days and subsided. Then a few weeks later, I woke up with the same pain and it never went away. Everything got worse. Some pain has subsided, but my left side has so very many symptoms ( and sometimes the right side also gets tight around the abdomen) and the heart rate?? I was a weight lifter, runner, HIIT junkie and now going up my stairs causes a 150 pulse. And these weak legs scare me.
I just don't understand and it makes me so very sad that I just lay around all day after being so active. I'm not a quitter, and this has stopped me in my tracks.
Thank you so much, Hank!!
Aimer

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I have the internal shaking too.
As far as the heart rate, I would get to 152, just walking to kitchen. My doctor started me on metoprolol to lower my heart rate and it works great I can even take walks again.

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@mommo9

I have the internal shaking too.
As far as the heart rate, I would get to 152, just walking to kitchen. My doctor started me on metoprolol to lower my heart rate and it works great I can even take walks again.

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Gave me IBS.

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@brayimee

Hello! nice to meet you 🙂

I have not encountered any fevers. I will occasionally exprience profuse sweating, but only during a very bad flare up. I use to wake up soaked, but that has lessened. I take 2 Gabapentin and a muscle relaxer just to let me sleep for 8hrs. I know how very important sleep and hydration is. I do not believe I have been bitten by a tick, at least not to my knowledge. No Endocrinologist at this time, maybe the next step?
Right now as I type, I felt the internal vibration and when it stopped, I feel this tingling rush up into my head, and like a nerve sensation in my left abdomen and going down into my glutes. I know it sounds like the strangest thing, but it has been incredibly painful and likes to stick to the left side. I think one of the worst parts is my bowels don't work properly. Passing gas is so incredibly hard and I get so very bloated. Occasionally I can shift positions or do movements to help. Urinating has been better, but I would get so much pain on the left side from to being able to use the bathroom for both. PT has helped with some muscle relaxation and I see minimal improvement with the chiropractor. The chiropractor said I did have a lot of muscle tension and my spine was off in a few places, but I have had 6 adjustments with minimal improvement.
As far as the hemangiomas, I have this theory that because they are vascular tumors in my vertebrae, they swell when my heart rate goes up cause some radiating nerve pain. Such as the T11 if it swells with increased BP/Pulse, is it firing nerves?
This is what I have read about T11 nerves :These vertebrae are important in the control of your kidneys, ureters, colon, small intestines, lymph circulation system, buttocks, and the uterus (in women). As with any of your vertebrae, the T11 can be the culprit of a wide range of health problems. So these are areas I have had issues. As far as T1, this is what I have read: The T1-T4 thoracic sections control primarily chest muscles and organs, such as the heart and lungs. I do get tightness of chest and during this whole crazy issues, my heart started PACs and STVs. I have never had heart health issues and woke up one day having them. So Like I said these are theories, but I just wonder if something is misfiring with nerves and my heart?? I am occasionally able to help my bowels with tennis balls lined up against the spine. Strange!

Thank you for your reply. All advice and questions are welcome!

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It must be so hard for you to feel all these awful things.. my heart goes out to you..🥲
I have internal vibrations as well as terrible tinnitus & these make me very anxious.. & when I am anxious all hell breaks loose.. it becomes a vicious circle.. we suffer.. we want to cure ourselves so we become obsessed about getting the right diagnosis & we see many doctors.. pass many tests with no conclusive results which makes us even more anxious which brings on more worrying symptoms.
I strongly recommend that you try soft medicine to relieve your anxiety which could be the culprit; meditation.. exercise.. find a hobby you are passionate about.. enjoy time with friends this has really helped me. Good luck🍀

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I am older but was always healthy generally until this year, at 62. Started showing symptoms about 2 yrs. with possible UTI's, yet never any bacteria in urine. It felt like retention? Lost feeling, numbness/weakness in first my feet, up my legs, and after falling and breaking my left ankle and going to E.R. in Feb. 2023. It took until August, after many blood tests, a spinal tap, and several MRI's before I was finally diagnosed with MOGAD. Look it up, ask your neurologist to do a test. I am so sorry you are going through this. MOGAD is rare, so many neurologists and doctors won't or don't recognize it. Hugs and Best Wishes to you!

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@teach3foruyahoocom

I am older but was always healthy generally until this year, at 62. Started showing symptoms about 2 yrs. with possible UTI's, yet never any bacteria in urine. It felt like retention? Lost feeling, numbness/weakness in first my feet, up my legs, and after falling and breaking my left ankle and going to E.R. in Feb. 2023. It took until August, after many blood tests, a spinal tap, and several MRI's before I was finally diagnosed with MOGAD. Look it up, ask your neurologist to do a test. I am so sorry you are going through this. MOGAD is rare, so many neurologists and doctors won't or don't recognize it. Hugs and Best Wishes to you!

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@teach3foruyahoocom
I’m so sorry to hear about your challenges with MOGAD. I looked it up. Never great to have rare disorders either. I have HNPP which is also rare. To read about it they only talk about the 85% of people with mild nuisance symptoms. Frustrating. For the other 15% it can be pretty challenging. My most limiting issue is chewing, swallowing, aspiration issues that really limit what I can eat. It can mimic myasthenia gravis for one thing plus a host of other neuropathy issues. It’s demyelinating so nerves are easily damaged. It’s genetic. My son has already had to have nerve transposition surgeries on both arms because of severe arm pain and loss of use in the last two fingers on both hands. We both have a lot of ongoing issues with it, but research dollars will be minimal since it’s rare and not life threatening unless I get aspiration pneumonia. My son and I have both battled issues with it since our teens. It’s slowly progressive without enough data to make predictions. There are definitely worse neuro diseases to have though so I always feel lucky in the grand scheme of things.

Prayers for you that you will see better days with all this. Neurological stuff seems to wax and wane a lot.

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@atina

It must be so hard for you to feel all these awful things.. my heart goes out to you..🥲
I have internal vibrations as well as terrible tinnitus & these make me very anxious.. & when I am anxious all hell breaks loose.. it becomes a vicious circle.. we suffer.. we want to cure ourselves so we become obsessed about getting the right diagnosis & we see many doctors.. pass many tests with no conclusive results which makes us even more anxious which brings on more worrying symptoms.
I strongly recommend that you try soft medicine to relieve your anxiety which could be the culprit; meditation.. exercise.. find a hobby you are passionate about.. enjoy time with friends this has really helped me. Good luck🍀

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Tinnitus and vibration could be connected to some degeneration or nerve tensions in your neck. I have that.
Disks in my cerebral (neck( have been depleted. I feel vibration in some position when sleeping but when I move it just goes away. I also do breathing exercises and the vibration goes away.

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@ddt2d

Tinnitus and vibration could be connected to some degeneration or nerve tensions in your neck. I have that.
Disks in my cerebral (neck( have been depleted. I feel vibration in some position when sleeping but when I move it just goes away. I also do breathing exercises and the vibration goes away.

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My neck it is very bad all the vertebrae c2, c3 etc

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