Has anyone experienced internal vibrations?

Hi @januaryjane those tremors sound very unsettling and I understand your fear that goes along with them. You may have noticed I moved your post to this existing discussion on internal vibrations so that you can connect with users like @bumble81 @2016dodge and @cathy514 who have similar experience and can learn from what they have said. Simply click VIEW & REPLY on your email notification to get to your post.

Back to you @januaryjane do you have a doctor you would feel comfortable discussing this with?

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Anyone heard of internal vibrations or tremors? Ive been experiencing hypnagogic hallucinations for a year so I assumed when I was lying down, these vibrations were related to narcolepsy. But i have them awake, i can move. Just feels like my bed is shaking. I am not diagnosed with any narcolepsy but do suffer from insomnia. I just am finding these little episodes to be weird, but am afraid to tell anyone. I do have raynauds and suffer from neuropathy, at times. I got a lot going on, is this something to worry about?

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Hi @januaryjane those tremors sound very unsettling and I understand your fear that goes along with them. You may have noticed I moved your post to this existing discussion on internal vibrations so that you can connect with users like @bumble81 @2016dodge and @cathy514 who have similar experience and can learn from what they have said. Simply click VIEW & REPLY on your email notification to get to your post.

Back to you @januaryjane do you have a doctor you would feel comfortable discussing this with?

Jump to this post

Someone asked me to post my symptoms but I was not feeling well at the time and so I never responded. I do have a diagnosis of small fiber neuropathy with my first symptoms in 1999. Subsequent to the onset, I took 1600 mg of Neurontin and 10 mg of Flexeril which helped me sleep. I was a zombie until 2 or 3 pm the following day. My pain was primarily in my tailbone after taking the drugs and getting some sleep. However, upon awakening, my tailbone was on fire. This continued until I retired about 8 years later in 2007 due to the pain and my inability to function well with poor sleep and medication side effects. When I retired I decided I was going to get off of meds. I tried several times before having success in about 2008. I was off of meds for no more than a month before the tailbone pain worsened and what had been experienced as cold feet turned out to be PN. The pins and needs, shearing flesh pain moved up my legs until my doctors were urging me to take more Neurontin which I did but not at the 1600 mg level. My chronic digestive issues worsened and after a month of uncontrollable diarrhea I was put on Creon for over a year which helped a little. Three years ago I was hospitalized for a heart attack which turned out to be something else. For the last 6 or 7 years my symptoms have been typical of what people reported here... numbness in my feet sometimes extending to my hip, a feeling like I have pins or nails in toes and fingers which was better described by someone here as a feeling like being pinched by pliers. My neurologist of 4 years told me symptoms do not go beyond the arms but it was this site that helped me understand that my vision issues, focus going in and out, and sometimes a burning sensation in the middle of my eye, could be related to SFN. I also have burning in my ears, tinnitus, a feeling like I have a cut in my tongue, and occasionally dry lips, mouth and numbness in those areas. But all, if not most of these symptoms have been reported by others.

Here is the purpose of my lengthy, but not comprehensive, background. I have another issue which I wonder if it is related to SFN. I mentioned this to a new primary care physician a couple of years ago but this was at the end of our time and he just waved me off indicating he didn't want to hear about it.

This other issue is an embarrassing one but I'm at a point of needing to find out which direction I need to go even though I'm damn tired of seeing doctors. I get a partial swelling in my penis without any sexual thoughts or stimulation. This is particularly embarrassing when talking to my male neighbors in that I sense they can tell. This happens when I'm alone doing yard chores or when I'm alone at the computer like right now. I would appreciate anyone telling me if this could be SFN and that I just need to ignore it or whether it might be a symptom of something else. I have googled it but I did not find anything.

Jump to this post

Anyone heard of internal vibrations or tremors? Ive been experiencing hypnagogic hallucinations for a year so I assumed when I was lying down, these vibrations were related to narcolepsy. But i have them awake, i can move. Just feels like my bed is shaking. I am not diagnosed with any narcolepsy but do suffer from insomnia. I just am finding these little episodes to be weird, but am afraid to tell anyone. I do have raynauds and suffer from neuropathy, at times. I got a lot going on, is this something to worry about?

Jump to this post

Hello @januaryjane
As you know, those of us on Mayo Connect are not medical professionals so we cannot diagnose problems like yours. We can, however, share from our own experiences. I have a form of Parkinson's. I do not have the typical tremors but I do understand the feeling of internal tremors. I have met many people in Parkinson's support groups who have also talked about the internal tremors.
Seeing a rheumatologist is a good idea, and you might also ask for a referral to a movement disorder specialist. This is a group of neurologists who treat specific movement disorders such as Parkinson's and other disorders. Perhaps they could help you with a diagnosis as well.

Will you keep posting and let me know how you are doing?

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Hi, @januaryjane - since you mentioned insomnia and hypnagogic hallucinations, you might also check out some of the Mayo Clinic Connect discussions in the Sleep Health group, https://connect.mayoclinic.org/group/sleep-health/. Hypnagogic hallucinations would also be a great topic for discussion in the Sleep Health group, if you'd be interested in starting it.

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Someone asked me to post my symptoms but I was not feeling well at the time and so I never responded. I do have a diagnosis of small fiber neuropathy with my first symptoms in 1999. Subsequent to the onset, I took 1600 mg of Neurontin and 10 mg of Flexeril which helped me sleep. I was a zombie until 2 or 3 pm the following day. My pain was primarily in my tailbone after taking the drugs and getting some sleep. However, upon awakening, my tailbone was on fire. This continued until I retired about 8 years later in 2007 due to the pain and my inability to function well with poor sleep and medication side effects. When I retired I decided I was going to get off of meds. I tried several times before having success in about 2008. I was off of meds for no more than a month before the tailbone pain worsened and what had been experienced as cold feet turned out to be PN. The pins and needs, shearing flesh pain moved up my legs until my doctors were urging me to take more Neurontin which I did but not at the 1600 mg level. My chronic digestive issues worsened and after a month of uncontrollable diarrhea I was put on Creon for over a year which helped a little. Three years ago I was hospitalized for a heart attack which turned out to be something else. For the last 6 or 7 years my symptoms have been typical of what people reported here... numbness in my feet sometimes extending to my hip, a feeling like I have pins or nails in toes and fingers which was better described by someone here as a feeling like being pinched by pliers. My neurologist of 4 years told me symptoms do not go beyond the arms but it was this site that helped me understand that my vision issues, focus going in and out, and sometimes a burning sensation in the middle of my eye, could be related to SFN. I also have burning in my ears, tinnitus, a feeling like I have a cut in my tongue, and occasionally dry lips, mouth and numbness in those areas. But all, if not most of these symptoms have been reported by others.

Here is the purpose of my lengthy, but not comprehensive, background. I have another issue which I wonder if it is related to SFN. I mentioned this to a new primary care physician a couple of years ago but this was at the end of our time and he just waved me off indicating he didn't want to hear about it.

This other issue is an embarrassing one but I'm at a point of needing to find out which direction I need to go even though I'm damn tired of seeing doctors. I get a partial swelling in my penis without any sexual thoughts or stimulation. This is particularly embarrassing when talking to my male neighbors in that I sense they can tell. This happens when I'm alone doing yard chores or when I'm alone at the computer like right now. I would appreciate anyone telling me if this could be SFN and that I just need to ignore it or whether it might be a symptom of something else. I have googled it but I did not find anything.

Jump to this post