Has anyone experienced internal vibrations?

Posted by redladyjoni @redladyjoni, Nov 26, 2018

I started having the only way I can explain it is internal vibrations. I've had them for 3 months now, I went to t hihe ER and they told me it was anxiety. A doctor diagnosed me at a clinic as having Lyme disease I've started a 21-day prescription of Doxycycline I'm on day 7. I went to a psychiatrist a week ago to get something because of my nerves are just over the brink. He prescribed me Gabapentin and Valium I've only been on them a few days.
Has anyone experienced these internal vibrations?I have them almost 24/7 chest neck stomach from the hips down. I have more lab tests that should be in today, but the doctor's office said that they would not call unless there was some abnormality in the lab work.

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

@shuvhfa1

Hi I am a South Asian male age 20. From few days I have problems that at day time I am feeling dizzy not vertigo but feeling unbalanced and that I will fall. After checking for pressure blood all are normal. But in evening time I have internal shaking in all my body. And finally in night 2-3 am I have tremor attack. Like my whole body especially trunk and hands started vibrating with large amplitude and it lasts up to 1 hour. Also Everyday it occurs at the same time. I have done my cbc all are normal. Visited my doctor doctor gave me Clonazepam and lexapro after taking this medicine tremor attacks stopped But internal shaking didn't stop. What can be the reasons behind it

Jump to this post

Did you have mri with contrast google gadolinium poisoning many have internal vibrations and brain fog insomnia tinnitus hair loss sweats cognitive decline and many more health issues

REPLY
@cathy514

I got internal vibrations after 2 mri with contrast

Jump to this post

Something you might look at is this announcement from the Radiological Society of North America (RSNA) about gadolinium effects on the brain, based on a Mayo Clinic study https://rsna2017.rsna.org/dailybulletin/index.cfm?pg=17fri10.

How are you doing, @cathy514?

REPLY

Background (including two possible red herrings):

40 yo white male. Healthy and fit overall. No existing issues or diagnoses prior to this except sleep apnea. I religiously use my cpap every night since I like breathing better with it. Regularly worked out until the Oct 19 injury below, and then getting sick. No stressful extraordinary life situations that would be causing anxiety, etc other than the below issue itself.

October 2019 - injured L4/L5 doing yard work. Had to go to ER and was given toradol injection and sent home with a plan for physical therapy. Completed 12 weeks of therapy, and at this point I don’t really have pain from that injury anymore.

November 2019 - noticed a globus sensation in throat just above the sternum in that “pocket”, when swallowing. Waxes and wanes but at times was infuriating and worrisome. Saw GI and was scoped. He noted irritation and potential eosinophilic esophagitis. The biopsy came back without much eosinophil though. GI says still clinically presents as EoE and recommended no gluten, dairy, soy or egg for a while since that corrects EoE for most folks. Lately (supported by allergy testing) I have reintroduced egg and dairy but am avoiding grains. The globus still present today and waxes and wanes with not a ton of improvement overall since November.

(MAIN ISSUE)
January 2020 - first two weeks of Jan 2020 I had severe fatigue, headaches, tinnitus ripping in both ears, dizziness and nausea. Never any fever. The type of fatigue where I’d fall asleep at work talking to my boss, or fall asleep on the floor with my daughter playing in the evening, or sleep in until 10-12 on a weekend. Saturday January 18 I remember waking up at 8 am and realizing I wasn’t in any shape to get up. I fell back to sleep and then what is ruining my life now happened at noon. I woke at noon to feel a tingle and vibration sensation start at my neck and travel parallel down both arms and out my fingers. This took about 5 seconds and stopped as I woke up more and sat up. It really freaked me out and I texted my wife that the strangest thing happened.

Chalked it up to just feeling sick still and got on with the day. Well, after this, for weeks every time I would wake up (nap, normal morning, couch, bed) I would have the same vibrations shoot down my arms and out my fingers. It was scary but I almost got used to it and expected it.

Two weeks later, things progressed and I noticed this same feeling happen AS I was falling asleep. Right as my brain shifted to less conscious, the vibration down the arms happened. Then again when I woke up, like before.

Shortly after, things progressed and I began to wake up in the night with the vibration down the arms. Sometimes multiple times.

The next progression was waking up in the night to the vibrations now traveling down both legs and out my toes. I’ll never forget that first time it did that. Very scary. In all cases, as it wakes me up and I become more alert, the vibrations stopped.

Next progression was waking up to the back of my head, neck and throat/chest vibrating. I was so scared and woke my wife up and was hollering about it. At that point my voice was completely warbling and it was confirmation my vocal cords were tremoring at that same rapid high frequency.

Sadly, things have now progressed even further on two accounts. First, now my legs and trunk vibrate and internal tremor (never visibly shake, but it can be felt by others squeezing me when it happens) EVERY time I simply lay down. I don’t even have to start to fall sleep. Simply laying down or even often sitting, I’ll feel the internal rapid tremor in my legs and left arm and sometimes lips, jaw and tongue. Second, I now have cramping in my calves and weakness in my thighs during the day, along with nerve discomfort (sort of aching weakness) in my ankles, and cold feet with toes occasionally going numb. In addition, my grip is weak in both hands when I wake in the night and in the morning. As I get up and going, grip strength is fine again.

Each night is a torture from hell. I am up many hours each night upset and in discomfort. I hate even going to bed knowing what is coming. Now the days are scary and depressing too, with the cramps and weakness. Most of the time, I do not have any of the crazy fatigue, headaches, or nausea that I did in January leading up to this. The one thing that remains constant is the tinnitus. I’d classify it as mild/moderate but always there. The muscles in my forearm, thighs and calves will fire (single jolt/spasm) in the day, as well. The other thing I’ve noticed is when I wake up multiple times in the night, I very often have part of an arm, hand or fingers completely asleep. Sometimes they feel like a rubber chicken. They normalize after I wake up and move around. I’d only occasionally have an asleep limb (like any normal person) prior to this. Now something is asleep basically nightly.

Doctors/tests to date:

Primary care - ordered CBC, metabolic, ANA/auto immune and all came back fine. He ordered CT of neck, given a sore and swollen node on my neck during the start of this when I felt so fatigued and ill. CT noted nothing egregious, but one 1.5cm node on the right neck (the one that was sore). He doesn’t have any idea.

Endocrinologist - ordered vitamin levels (B, D), chromogranin A, and thyroid bloodwork. Ultrasound of thyroid. All came back fine. She doesn’t have any idea. Ultrasound did note one 1.5cm node in right neck (same as neck CT did)

Immunologist - he has no idea.

Rheumatologist - I asked about CIPD or lupus and he said no. Ordered bloodwork for iron (waiting on results). He has no idea.

Neurologist - initially suspected partial seizures given the massive “out of body” fatigue I had in January, coupled with the inner tremors. We tried Aptiom for a few days but things got worse with the cramping and tremors so we stopped and switched to Cymbalta, thinking it might be a neuropathy pain (even though I mentioned the tremoring was the root issue, in my opinion). The Cymbalta was horrible for me and I fought through taking it for a week and saw no improvement until I was switched to Gabapentin (see below).

He has ordered: brain MRI w and w/o contrast (looking for MS or tumor), short term EEG (looking for seizure), and an EMG (looking for ALS and Myasthenia Gravis). All came back fine. He then ordered a 48 hour home EEG where I pressed a button when I felt events and wrote about them. In the two days, I ended up with NINE pages of events. And that was with just giving up at night since I was so tired and couldn’t keep writing in the dark as I kept being awakened by vibration. I do not have the results back from this test yet.

At this point, the neuro mentioned maybe doing a spinal MRI and a sleep test, but he admits he is confused and out of ideas at this point. He has not mentioned a muscle biopsy or lumbar puncture.

Because he is out of ideas and he can tell how miserable I am, he supported me going to the ER when I couldn’t take it any longer. I went last week to Jefferson in philly (supposedly amongst the top neuro facilities in the country) and saw the on call neuro. He first said stop the Cymbalta since it wasn’t helping me and made me feel awful and start Gabapentin. He then said he suspects small fiber neuropathy. I asked if that would explain the laying down inner tremors and he said maybe but it didn’t seem convincing. I also have only ever had one numb toe on and off, and cold feet from time to time. Never any pain or pins and needles in the toes and fingers. This doctor suggested we do a skin punch biopsy to dig into the small fiber diagnosis more. I’m all for it but in my heart I don’t believe that’s the core issue.

In standard neurological exams, I have passed every test, with the exception of failing the cold feel (cold piece of metal) on both feet and ankles, in the ER. I admitted that, at times since three weeks ago, my feet go very cold.

I am on day 5 of gabapentin (titrating from 300mg up to 909mg daily) but no miraculous results.

My poor wife is up hours with my every night while I am in misery, and it is taking a real toll on our lives as we try to keep life moving with our child, our jobs, etc. We are basically in tears as each successive doctor has no idea and admits they can’t help me.

Hoping some folks on here might have some ideas or guidance as I keep working with neuros and follow up with the other specialists and my primary.

Thank you.

REPLY
@novajeff

Background (including two possible red herrings):

40 yo white male. Healthy and fit overall. No existing issues or diagnoses prior to this except sleep apnea. I religiously use my cpap every night since I like breathing better with it. Regularly worked out until the Oct 19 injury below, and then getting sick. No stressful extraordinary life situations that would be causing anxiety, etc other than the below issue itself.

October 2019 - injured L4/L5 doing yard work. Had to go to ER and was given toradol injection and sent home with a plan for physical therapy. Completed 12 weeks of therapy, and at this point I don’t really have pain from that injury anymore.

November 2019 - noticed a globus sensation in throat just above the sternum in that “pocket”, when swallowing. Waxes and wanes but at times was infuriating and worrisome. Saw GI and was scoped. He noted irritation and potential eosinophilic esophagitis. The biopsy came back without much eosinophil though. GI says still clinically presents as EoE and recommended no gluten, dairy, soy or egg for a while since that corrects EoE for most folks. Lately (supported by allergy testing) I have reintroduced egg and dairy but am avoiding grains. The globus still present today and waxes and wanes with not a ton of improvement overall since November.

(MAIN ISSUE)
January 2020 - first two weeks of Jan 2020 I had severe fatigue, headaches, tinnitus ripping in both ears, dizziness and nausea. Never any fever. The type of fatigue where I’d fall asleep at work talking to my boss, or fall asleep on the floor with my daughter playing in the evening, or sleep in until 10-12 on a weekend. Saturday January 18 I remember waking up at 8 am and realizing I wasn’t in any shape to get up. I fell back to sleep and then what is ruining my life now happened at noon. I woke at noon to feel a tingle and vibration sensation start at my neck and travel parallel down both arms and out my fingers. This took about 5 seconds and stopped as I woke up more and sat up. It really freaked me out and I texted my wife that the strangest thing happened.

Chalked it up to just feeling sick still and got on with the day. Well, after this, for weeks every time I would wake up (nap, normal morning, couch, bed) I would have the same vibrations shoot down my arms and out my fingers. It was scary but I almost got used to it and expected it.

Two weeks later, things progressed and I noticed this same feeling happen AS I was falling asleep. Right as my brain shifted to less conscious, the vibration down the arms happened. Then again when I woke up, like before.

Shortly after, things progressed and I began to wake up in the night with the vibration down the arms. Sometimes multiple times.

The next progression was waking up in the night to the vibrations now traveling down both legs and out my toes. I’ll never forget that first time it did that. Very scary. In all cases, as it wakes me up and I become more alert, the vibrations stopped.

Next progression was waking up to the back of my head, neck and throat/chest vibrating. I was so scared and woke my wife up and was hollering about it. At that point my voice was completely warbling and it was confirmation my vocal cords were tremoring at that same rapid high frequency.

Sadly, things have now progressed even further on two accounts. First, now my legs and trunk vibrate and internal tremor (never visibly shake, but it can be felt by others squeezing me when it happens) EVERY time I simply lay down. I don’t even have to start to fall sleep. Simply laying down or even often sitting, I’ll feel the internal rapid tremor in my legs and left arm and sometimes lips, jaw and tongue. Second, I now have cramping in my calves and weakness in my thighs during the day, along with nerve discomfort (sort of aching weakness) in my ankles, and cold feet with toes occasionally going numb. In addition, my grip is weak in both hands when I wake in the night and in the morning. As I get up and going, grip strength is fine again.

Each night is a torture from hell. I am up many hours each night upset and in discomfort. I hate even going to bed knowing what is coming. Now the days are scary and depressing too, with the cramps and weakness. Most of the time, I do not have any of the crazy fatigue, headaches, or nausea that I did in January leading up to this. The one thing that remains constant is the tinnitus. I’d classify it as mild/moderate but always there. The muscles in my forearm, thighs and calves will fire (single jolt/spasm) in the day, as well. The other thing I’ve noticed is when I wake up multiple times in the night, I very often have part of an arm, hand or fingers completely asleep. Sometimes they feel like a rubber chicken. They normalize after I wake up and move around. I’d only occasionally have an asleep limb (like any normal person) prior to this. Now something is asleep basically nightly.

Doctors/tests to date:

Primary care - ordered CBC, metabolic, ANA/auto immune and all came back fine. He ordered CT of neck, given a sore and swollen node on my neck during the start of this when I felt so fatigued and ill. CT noted nothing egregious, but one 1.5cm node on the right neck (the one that was sore). He doesn’t have any idea.

Endocrinologist - ordered vitamin levels (B, D), chromogranin A, and thyroid bloodwork. Ultrasound of thyroid. All came back fine. She doesn’t have any idea. Ultrasound did note one 1.5cm node in right neck (same as neck CT did)

Immunologist - he has no idea.

Rheumatologist - I asked about CIPD or lupus and he said no. Ordered bloodwork for iron (waiting on results). He has no idea.

Neurologist - initially suspected partial seizures given the massive “out of body” fatigue I had in January, coupled with the inner tremors. We tried Aptiom for a few days but things got worse with the cramping and tremors so we stopped and switched to Cymbalta, thinking it might be a neuropathy pain (even though I mentioned the tremoring was the root issue, in my opinion). The Cymbalta was horrible for me and I fought through taking it for a week and saw no improvement until I was switched to Gabapentin (see below).

He has ordered: brain MRI w and w/o contrast (looking for MS or tumor), short term EEG (looking for seizure), and an EMG (looking for ALS and Myasthenia Gravis). All came back fine. He then ordered a 48 hour home EEG where I pressed a button when I felt events and wrote about them. In the two days, I ended up with NINE pages of events. And that was with just giving up at night since I was so tired and couldn’t keep writing in the dark as I kept being awakened by vibration. I do not have the results back from this test yet.

At this point, the neuro mentioned maybe doing a spinal MRI and a sleep test, but he admits he is confused and out of ideas at this point. He has not mentioned a muscle biopsy or lumbar puncture.

Because he is out of ideas and he can tell how miserable I am, he supported me going to the ER when I couldn’t take it any longer. I went last week to Jefferson in philly (supposedly amongst the top neuro facilities in the country) and saw the on call neuro. He first said stop the Cymbalta since it wasn’t helping me and made me feel awful and start Gabapentin. He then said he suspects small fiber neuropathy. I asked if that would explain the laying down inner tremors and he said maybe but it didn’t seem convincing. I also have only ever had one numb toe on and off, and cold feet from time to time. Never any pain or pins and needles in the toes and fingers. This doctor suggested we do a skin punch biopsy to dig into the small fiber diagnosis more. I’m all for it but in my heart I don’t believe that’s the core issue.

In standard neurological exams, I have passed every test, with the exception of failing the cold feel (cold piece of metal) on both feet and ankles, in the ER. I admitted that, at times since three weeks ago, my feet go very cold.

I am on day 5 of gabapentin (titrating from 300mg up to 909mg daily) but no miraculous results.

My poor wife is up hours with my every night while I am in misery, and it is taking a real toll on our lives as we try to keep life moving with our child, our jobs, etc. We are basically in tears as each successive doctor has no idea and admits they can’t help me.

Hoping some folks on here might have some ideas or guidance as I keep working with neuros and follow up with the other specialists and my primary.

Thank you.

Jump to this post

Hi, @novajeff - welcome to Mayo Clinic Connect. The trouble with internal vibrations you are talking about, the dread and the sleep disturbances sound tortuous, as you said.

I wanted to let you know I moved your post here so that you can talk with others discussing internal vibrations here in this thread. Please meet @shuvhfa1 @cathy514 @jager5210 @redladyjoni @hopeful33250 and others. I'd also like you to meet @jenniferhunter. Hoping they will have some input on how to get some help so you can get some relief.

Are you thinking of proceeding with the skin punch biopsy, or do you have other thoughts on what will be your next step in getting some answers?

REPLY
@lisalucier

Hi, @novajeff - welcome to Mayo Clinic Connect. The trouble with internal vibrations you are talking about, the dread and the sleep disturbances sound tortuous, as you said.

I wanted to let you know I moved your post here so that you can talk with others discussing internal vibrations here in this thread. Please meet @shuvhfa1 @cathy514 @jager5210 @redladyjoni @hopeful33250 and others. I'd also like you to meet @jenniferhunter. Hoping they will have some input on how to get some help so you can get some relief.

Are you thinking of proceeding with the skin punch biopsy, or do you have other thoughts on what will be your next step in getting some answers?

Jump to this post

Thanks @lisalucier Lisa,

It is torture and terrifying. It is sunny and nice in Philly today so I am outside for the majority of the day doing yard work, so it will be interesting to see how the soreness and tremors are tonight after all this muscle exercise.

I am going to press for the skin punch biopsy and any other test they want to throw at me. I need answers and resolution. I am also going to press for the sleep test and spinal MRI. I’m also surprised none of the neuros have pursued a spinal puncture either.

Thanks again for your post and trying to connect me with others. One of the scary things is, when I use a detailed google search for my issues, I’ve found 5-7 people who clearly have had the same issue over the past 1-3 years, but after they post, they just disappear.

REPLY
@novajeff

Background (including two possible red herrings):

40 yo white male. Healthy and fit overall. No existing issues or diagnoses prior to this except sleep apnea. I religiously use my cpap every night since I like breathing better with it. Regularly worked out until the Oct 19 injury below, and then getting sick. No stressful extraordinary life situations that would be causing anxiety, etc other than the below issue itself.

October 2019 - injured L4/L5 doing yard work. Had to go to ER and was given toradol injection and sent home with a plan for physical therapy. Completed 12 weeks of therapy, and at this point I don’t really have pain from that injury anymore.

November 2019 - noticed a globus sensation in throat just above the sternum in that “pocket”, when swallowing. Waxes and wanes but at times was infuriating and worrisome. Saw GI and was scoped. He noted irritation and potential eosinophilic esophagitis. The biopsy came back without much eosinophil though. GI says still clinically presents as EoE and recommended no gluten, dairy, soy or egg for a while since that corrects EoE for most folks. Lately (supported by allergy testing) I have reintroduced egg and dairy but am avoiding grains. The globus still present today and waxes and wanes with not a ton of improvement overall since November.

(MAIN ISSUE)
January 2020 - first two weeks of Jan 2020 I had severe fatigue, headaches, tinnitus ripping in both ears, dizziness and nausea. Never any fever. The type of fatigue where I’d fall asleep at work talking to my boss, or fall asleep on the floor with my daughter playing in the evening, or sleep in until 10-12 on a weekend. Saturday January 18 I remember waking up at 8 am and realizing I wasn’t in any shape to get up. I fell back to sleep and then what is ruining my life now happened at noon. I woke at noon to feel a tingle and vibration sensation start at my neck and travel parallel down both arms and out my fingers. This took about 5 seconds and stopped as I woke up more and sat up. It really freaked me out and I texted my wife that the strangest thing happened.

Chalked it up to just feeling sick still and got on with the day. Well, after this, for weeks every time I would wake up (nap, normal morning, couch, bed) I would have the same vibrations shoot down my arms and out my fingers. It was scary but I almost got used to it and expected it.

Two weeks later, things progressed and I noticed this same feeling happen AS I was falling asleep. Right as my brain shifted to less conscious, the vibration down the arms happened. Then again when I woke up, like before.

Shortly after, things progressed and I began to wake up in the night with the vibration down the arms. Sometimes multiple times.

The next progression was waking up in the night to the vibrations now traveling down both legs and out my toes. I’ll never forget that first time it did that. Very scary. In all cases, as it wakes me up and I become more alert, the vibrations stopped.

Next progression was waking up to the back of my head, neck and throat/chest vibrating. I was so scared and woke my wife up and was hollering about it. At that point my voice was completely warbling and it was confirmation my vocal cords were tremoring at that same rapid high frequency.

Sadly, things have now progressed even further on two accounts. First, now my legs and trunk vibrate and internal tremor (never visibly shake, but it can be felt by others squeezing me when it happens) EVERY time I simply lay down. I don’t even have to start to fall sleep. Simply laying down or even often sitting, I’ll feel the internal rapid tremor in my legs and left arm and sometimes lips, jaw and tongue. Second, I now have cramping in my calves and weakness in my thighs during the day, along with nerve discomfort (sort of aching weakness) in my ankles, and cold feet with toes occasionally going numb. In addition, my grip is weak in both hands when I wake in the night and in the morning. As I get up and going, grip strength is fine again.

Each night is a torture from hell. I am up many hours each night upset and in discomfort. I hate even going to bed knowing what is coming. Now the days are scary and depressing too, with the cramps and weakness. Most of the time, I do not have any of the crazy fatigue, headaches, or nausea that I did in January leading up to this. The one thing that remains constant is the tinnitus. I’d classify it as mild/moderate but always there. The muscles in my forearm, thighs and calves will fire (single jolt/spasm) in the day, as well. The other thing I’ve noticed is when I wake up multiple times in the night, I very often have part of an arm, hand or fingers completely asleep. Sometimes they feel like a rubber chicken. They normalize after I wake up and move around. I’d only occasionally have an asleep limb (like any normal person) prior to this. Now something is asleep basically nightly.

Doctors/tests to date:

Primary care - ordered CBC, metabolic, ANA/auto immune and all came back fine. He ordered CT of neck, given a sore and swollen node on my neck during the start of this when I felt so fatigued and ill. CT noted nothing egregious, but one 1.5cm node on the right neck (the one that was sore). He doesn’t have any idea.

Endocrinologist - ordered vitamin levels (B, D), chromogranin A, and thyroid bloodwork. Ultrasound of thyroid. All came back fine. She doesn’t have any idea. Ultrasound did note one 1.5cm node in right neck (same as neck CT did)

Immunologist - he has no idea.

Rheumatologist - I asked about CIPD or lupus and he said no. Ordered bloodwork for iron (waiting on results). He has no idea.

Neurologist - initially suspected partial seizures given the massive “out of body” fatigue I had in January, coupled with the inner tremors. We tried Aptiom for a few days but things got worse with the cramping and tremors so we stopped and switched to Cymbalta, thinking it might be a neuropathy pain (even though I mentioned the tremoring was the root issue, in my opinion). The Cymbalta was horrible for me and I fought through taking it for a week and saw no improvement until I was switched to Gabapentin (see below).

He has ordered: brain MRI w and w/o contrast (looking for MS or tumor), short term EEG (looking for seizure), and an EMG (looking for ALS and Myasthenia Gravis). All came back fine. He then ordered a 48 hour home EEG where I pressed a button when I felt events and wrote about them. In the two days, I ended up with NINE pages of events. And that was with just giving up at night since I was so tired and couldn’t keep writing in the dark as I kept being awakened by vibration. I do not have the results back from this test yet.

At this point, the neuro mentioned maybe doing a spinal MRI and a sleep test, but he admits he is confused and out of ideas at this point. He has not mentioned a muscle biopsy or lumbar puncture.

Because he is out of ideas and he can tell how miserable I am, he supported me going to the ER when I couldn’t take it any longer. I went last week to Jefferson in philly (supposedly amongst the top neuro facilities in the country) and saw the on call neuro. He first said stop the Cymbalta since it wasn’t helping me and made me feel awful and start Gabapentin. He then said he suspects small fiber neuropathy. I asked if that would explain the laying down inner tremors and he said maybe but it didn’t seem convincing. I also have only ever had one numb toe on and off, and cold feet from time to time. Never any pain or pins and needles in the toes and fingers. This doctor suggested we do a skin punch biopsy to dig into the small fiber diagnosis more. I’m all for it but in my heart I don’t believe that’s the core issue.

In standard neurological exams, I have passed every test, with the exception of failing the cold feel (cold piece of metal) on both feet and ankles, in the ER. I admitted that, at times since three weeks ago, my feet go very cold.

I am on day 5 of gabapentin (titrating from 300mg up to 909mg daily) but no miraculous results.

My poor wife is up hours with my every night while I am in misery, and it is taking a real toll on our lives as we try to keep life moving with our child, our jobs, etc. We are basically in tears as each successive doctor has no idea and admits they can’t help me.

Hoping some folks on here might have some ideas or guidance as I keep working with neuros and follow up with the other specialists and my primary.

Thank you.

Jump to this post

@novajeff Since you mention a spine injury, and not having had a full spine MRI, That would be my suggestion. Also, because it is when you lay down that you get major symptoms, so here is something to consider about spine injuries. You can have instability and movement of the vertebrae out of normal alignment, and that may be happening when you recline vs when you are standing. A lot of spine centers have standing full body X ray machines for this reason to compare if change of position causes a big shift physically in the spine between upright and laying down. There are also upright MRI machines vs normal ones where you recline. Instability can put pressure on the spinal cord if it is bad, and also on nerve roots. I am a Mayo spine surgery patient for a cervical spinal cord compression, and I had a slight amount of retrolisthesis which is a backward shift of one vertebrae over the one below it which was just 4 mm, but that was enough to cause a change in my symptoms, and when my physical therapist realigned my spine, it got better temporarily until the next muscle spasm caused a shift again and effectively narrowed the spinal canal.

REPLY
@jenniferhunter

@novajeff Since you mention a spine injury, and not having had a full spine MRI, That would be my suggestion. Also, because it is when you lay down that you get major symptoms, so here is something to consider about spine injuries. You can have instability and movement of the vertebrae out of normal alignment, and that may be happening when you recline vs when you are standing. A lot of spine centers have standing full body X ray machines for this reason to compare if change of position causes a big shift physically in the spine between upright and laying down. There are also upright MRI machines vs normal ones where you recline. Instability can put pressure on the spinal cord if it is bad, and also on nerve roots. I am a Mayo spine surgery patient for a cervical spinal cord compression, and I had a slight amount of retrolisthesis which is a backward shift of one vertebrae over the one below it which was just 4 mm, but that was enough to cause a change in my symptoms, and when my physical therapist realigned my spine, it got better temporarily until the next muscle spasm caused a shift again and effectively narrowed the spinal canal.

Jump to this post

Thank you @jenniferhunter

I will take that info to the doctor. Most doctors have dismissed my back injury as a cause because it was L4/L5 (very low back) and my tremors happen in the rear side of my head, neck, lips, tongue, and arms (and then of course legs). They said that spinal issues can only travel down, now up. Hopefully I can get the spine MRI and we will see.

Thanks again.

REPLY
@novajeff

Thank you @jenniferhunter

I will take that info to the doctor. Most doctors have dismissed my back injury as a cause because it was L4/L5 (very low back) and my tremors happen in the rear side of my head, neck, lips, tongue, and arms (and then of course legs). They said that spinal issues can only travel down, now up. Hopefully I can get the spine MRI and we will see.

Thanks again.

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@novajeff I would ask for full spine MRI imaging. In my case, I had spinal cord compression at C5/C6 that caused pain all over my body. It is called funicular pain, and that was missed by 5 spine surgeons before I came to Mayo. You could have issues in another part of your spine unless that has been ruled out by imaging. I had pain in my head, neck and jaw and cervicogenic headaches, all of that was above the level of my spinal cord compression. Muscle spasms were partly to blame. I have a bulging lumbar disc which was pretty asymptomatic until I had spinal cord compression in my neck and then a lot of sciatic pain, and pain everywhere, in every dermatome in my body. At first, I cold change where the pain was by turning my head and repositioning the bone spurs on my spinal cord, and it was reproducible. None of those surgeons listed when I said that, and all denied help to me, so I came to Mayo where this was understood after I found medical literature with cases like mine. You might ask about alignment of your skull on top of your spine. If it is askew possibly from a muscle spasm, it can cause those symptoms. A lot of doctors don't put their hands on your neck to feel the alignment of the spinous processes on each vertebrae. Physical therapists do that a lot. After you get imaging and find out if you have instability in any part of the spine (Especially in cervical), you could get an assessment with a physical therapist. It is dangerous for therapist to work on your spine if there is cervical instability.

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@novajeff

Background (including two possible red herrings):

40 yo white male. Healthy and fit overall. No existing issues or diagnoses prior to this except sleep apnea. I religiously use my cpap every night since I like breathing better with it. Regularly worked out until the Oct 19 injury below, and then getting sick. No stressful extraordinary life situations that would be causing anxiety, etc other than the below issue itself.

October 2019 - injured L4/L5 doing yard work. Had to go to ER and was given toradol injection and sent home with a plan for physical therapy. Completed 12 weeks of therapy, and at this point I don’t really have pain from that injury anymore.

November 2019 - noticed a globus sensation in throat just above the sternum in that “pocket”, when swallowing. Waxes and wanes but at times was infuriating and worrisome. Saw GI and was scoped. He noted irritation and potential eosinophilic esophagitis. The biopsy came back without much eosinophil though. GI says still clinically presents as EoE and recommended no gluten, dairy, soy or egg for a while since that corrects EoE for most folks. Lately (supported by allergy testing) I have reintroduced egg and dairy but am avoiding grains. The globus still present today and waxes and wanes with not a ton of improvement overall since November.

(MAIN ISSUE)
January 2020 - first two weeks of Jan 2020 I had severe fatigue, headaches, tinnitus ripping in both ears, dizziness and nausea. Never any fever. The type of fatigue where I’d fall asleep at work talking to my boss, or fall asleep on the floor with my daughter playing in the evening, or sleep in until 10-12 on a weekend. Saturday January 18 I remember waking up at 8 am and realizing I wasn’t in any shape to get up. I fell back to sleep and then what is ruining my life now happened at noon. I woke at noon to feel a tingle and vibration sensation start at my neck and travel parallel down both arms and out my fingers. This took about 5 seconds and stopped as I woke up more and sat up. It really freaked me out and I texted my wife that the strangest thing happened.

Chalked it up to just feeling sick still and got on with the day. Well, after this, for weeks every time I would wake up (nap, normal morning, couch, bed) I would have the same vibrations shoot down my arms and out my fingers. It was scary but I almost got used to it and expected it.

Two weeks later, things progressed and I noticed this same feeling happen AS I was falling asleep. Right as my brain shifted to less conscious, the vibration down the arms happened. Then again when I woke up, like before.

Shortly after, things progressed and I began to wake up in the night with the vibration down the arms. Sometimes multiple times.

The next progression was waking up in the night to the vibrations now traveling down both legs and out my toes. I’ll never forget that first time it did that. Very scary. In all cases, as it wakes me up and I become more alert, the vibrations stopped.

Next progression was waking up to the back of my head, neck and throat/chest vibrating. I was so scared and woke my wife up and was hollering about it. At that point my voice was completely warbling and it was confirmation my vocal cords were tremoring at that same rapid high frequency.

Sadly, things have now progressed even further on two accounts. First, now my legs and trunk vibrate and internal tremor (never visibly shake, but it can be felt by others squeezing me when it happens) EVERY time I simply lay down. I don’t even have to start to fall sleep. Simply laying down or even often sitting, I’ll feel the internal rapid tremor in my legs and left arm and sometimes lips, jaw and tongue. Second, I now have cramping in my calves and weakness in my thighs during the day, along with nerve discomfort (sort of aching weakness) in my ankles, and cold feet with toes occasionally going numb. In addition, my grip is weak in both hands when I wake in the night and in the morning. As I get up and going, grip strength is fine again.

Each night is a torture from hell. I am up many hours each night upset and in discomfort. I hate even going to bed knowing what is coming. Now the days are scary and depressing too, with the cramps and weakness. Most of the time, I do not have any of the crazy fatigue, headaches, or nausea that I did in January leading up to this. The one thing that remains constant is the tinnitus. I’d classify it as mild/moderate but always there. The muscles in my forearm, thighs and calves will fire (single jolt/spasm) in the day, as well. The other thing I’ve noticed is when I wake up multiple times in the night, I very often have part of an arm, hand or fingers completely asleep. Sometimes they feel like a rubber chicken. They normalize after I wake up and move around. I’d only occasionally have an asleep limb (like any normal person) prior to this. Now something is asleep basically nightly.

Doctors/tests to date:

Primary care - ordered CBC, metabolic, ANA/auto immune and all came back fine. He ordered CT of neck, given a sore and swollen node on my neck during the start of this when I felt so fatigued and ill. CT noted nothing egregious, but one 1.5cm node on the right neck (the one that was sore). He doesn’t have any idea.

Endocrinologist - ordered vitamin levels (B, D), chromogranin A, and thyroid bloodwork. Ultrasound of thyroid. All came back fine. She doesn’t have any idea. Ultrasound did note one 1.5cm node in right neck (same as neck CT did)

Immunologist - he has no idea.

Rheumatologist - I asked about CIPD or lupus and he said no. Ordered bloodwork for iron (waiting on results). He has no idea.

Neurologist - initially suspected partial seizures given the massive “out of body” fatigue I had in January, coupled with the inner tremors. We tried Aptiom for a few days but things got worse with the cramping and tremors so we stopped and switched to Cymbalta, thinking it might be a neuropathy pain (even though I mentioned the tremoring was the root issue, in my opinion). The Cymbalta was horrible for me and I fought through taking it for a week and saw no improvement until I was switched to Gabapentin (see below).

He has ordered: brain MRI w and w/o contrast (looking for MS or tumor), short term EEG (looking for seizure), and an EMG (looking for ALS and Myasthenia Gravis). All came back fine. He then ordered a 48 hour home EEG where I pressed a button when I felt events and wrote about them. In the two days, I ended up with NINE pages of events. And that was with just giving up at night since I was so tired and couldn’t keep writing in the dark as I kept being awakened by vibration. I do not have the results back from this test yet.

At this point, the neuro mentioned maybe doing a spinal MRI and a sleep test, but he admits he is confused and out of ideas at this point. He has not mentioned a muscle biopsy or lumbar puncture.

Because he is out of ideas and he can tell how miserable I am, he supported me going to the ER when I couldn’t take it any longer. I went last week to Jefferson in philly (supposedly amongst the top neuro facilities in the country) and saw the on call neuro. He first said stop the Cymbalta since it wasn’t helping me and made me feel awful and start Gabapentin. He then said he suspects small fiber neuropathy. I asked if that would explain the laying down inner tremors and he said maybe but it didn’t seem convincing. I also have only ever had one numb toe on and off, and cold feet from time to time. Never any pain or pins and needles in the toes and fingers. This doctor suggested we do a skin punch biopsy to dig into the small fiber diagnosis more. I’m all for it but in my heart I don’t believe that’s the core issue.

In standard neurological exams, I have passed every test, with the exception of failing the cold feel (cold piece of metal) on both feet and ankles, in the ER. I admitted that, at times since three weeks ago, my feet go very cold.

I am on day 5 of gabapentin (titrating from 300mg up to 909mg daily) but no miraculous results.

My poor wife is up hours with my every night while I am in misery, and it is taking a real toll on our lives as we try to keep life moving with our child, our jobs, etc. We are basically in tears as each successive doctor has no idea and admits they can’t help me.

Hoping some folks on here might have some ideas or guidance as I keep working with neuros and follow up with the other specialists and my primary.

Thank you.

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Hello @novajeff,

I am sorry to hear of your internal vibrations. It sounds as if this is affecting many areas of your life and that it is not easy to adjust. It is a very frustrating thing to have a problem that doctors cannot diagnose and treat. Many of us on Connect, myself included, have had problems that took perseverance and years of searching before we found answers.

It sounds like you have been advocating for yourself quite well. You have seen a variety of specialists and they all seem to be trying very hard to help which is a good thing.

Is your neurologist considered a "movement disorder specialist?" This is a specific type of neurologist who deals with movement disorders.

Hard to diagnose problems can often be solved if you go to a Mayo facility for a consultation. Here is a link for their appointment department, http://mayocl.in/1mtmR63. In lieu of an appointment at Mayo, a university medical center that has a multi-disciplinary approach would also be good for a complicated issue such as yours.

Do you have any other problems that you might not have mentioned, such as a staggering gait (walking) problems, balance or vision problems?

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@pharis022

Can this be part of Fibromyalgia. I know the central nervous system is in overdrive and I always feel like I am in a fight or flight mode. I have taken too many medications to name, to no avail. Is there someone monitoring these post, who may give some insight?

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I also have internal vibrations for 18 months have not found any thing that will help, lots of testing And medications, only relief I get is to lay on a electric blanket on low heat 1-2 hours day

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