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Vibration Feeling In Legs


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Kat I am also wondering if it is another newish POTS symptom for me. I have not heard the term Orthostatic Tremor used. Are you affected by it every time you are upright or is it an intermittent problem ? I wonder has it been associated with a high NE level ? Did your Mayo doc offer up any explanation for it ? In addition to my intermittent buzzing/vibrating problem which can occur in any position I have an ever present jitteriness/tremor that is different than the other problem. The jitteryness/tremor problem has been controlled to a degree by clonidine but an orthostatic position maintained for very long will cause those symptoms to easily return. I have many questions to ask at my next appointment.

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Suthrngal , the current started about 2 years ago and has progressively worsened. The tremor started 9 years ago and is anything but tiny. It developed two weeks into a very strange spontaneous development of severe blistering, swelling and lesions between the fingers and all over my right hand.The first neurologist I saw all those years back asked me how much alcohol I drank which was none. I think the tremor was reflective of a worsening POTS symptom. The hand incident may not be related to the tremor except that for me an acute episode of anything left me with residual problems. Clonidine and Propranalol keep the tremor as well as other POTS symptoms somewhat under control. I have not felt as if taking those medications has any effect on the current feeling but I could be wrong in that if I were not taking those medications the current feeling might be worse. My NE levels both supine and standing are very high so that would account for a number of symptoms.

I would say small fiber neuropathy is typically treated with neurontin, lyrica, elavil, different SNRIs and well as other medications. For myself I don't yet have a confirmed diagnosis but my Rheumotologist is convinced of it. I am on neurontin which is helpful. I was on lyrica for 18 months but had terrible side effects. I also use lidoderm patches on my feet which is a bit unorthodox but is very helpful. When someone is diagnosed with SFN as with Autonomic Neuropathy one of the most important things to be done first is to try and determine the cause and treat that if possible. If you search past SFN posts you will find links and more information.

Janet

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Hi Janet,

Orthostatic Tremor is a movement disorder. It started as a buzzing or vibration. I could have it in any position. Honestly, I think I noticed it more at night when I was still. Overtime it moved more into my legs and was more noticeable when standing. If I stood still very long I would feel very off balance. Then I started having tremor in other places. As things progressed I started having trouble being upright period. My blood pressure and heart rate would go very high and bring on a host of symptoms. Now they have said it is POTS and maybe another type of dysautonomia. I had thought all tremor issues were due to the OT but as I read about dysautonomia there are a lot of people with tremors. They are both orthostatic conditions so it seems to me they have to be related.

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Hi Kat,

Thank you so much for elaborating and sharing your tremor/symptom history, progression and diagnosis. I'm sorry you are having to deal with this. It's all such an immense frustration and as with other symptoms I find it helpful to be able to understand what is behind its presence and what might alleviate or eliminate it. My situation seemed to have occurred in reverse of yours. My POTS symptoms started many years before my tremor did. I have seen the word tremulousness used in association with POTS a lot so I guess it is a pretty common symptom for many. Yes, I believe as well that OT and dysautonomia tremors are most likely related in some way. I hope you have discovered a treatment plan that is helpful for you.

Janet

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  • 2 weeks later...

Suthrngal, I was prescribed amitriptyline 10mg several years ago for sleep and pain. It is a tricyclic antidepressent as is nortryptaline. I found it to be extremely helpful but when I went to Mayo I had to be off of it for at least 48 hours prior to the qsart. I was found to have a sweating impairment so I was told by the Neuro that I could no longer take it as it is an anticholinergic drug and as such interfers with ones ability to sweat and can worsen pots symptoms for some. We are all so different though. Your doctor must think it will be helpful in your situation. I hope this helps.

Janet

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I have the same vibration in my legs constantly and I've had it since my onset of symptoms back in Dec 2009. Sometimes I can feel it in my abdomen as well. Every once in a while the vibration will suddenly stop for a moment and I stop whatever I'm doing for a second....it feels more weird to have NO vibration at this point! Lol! Mayo didn't seem overly concerned with the vibrations during my visits.

Dx'd with POTS, NCS, autonomic and sudomotor neuropathy, gastroparesis, fibro, migraines w/ aura and raynauds.

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Hello and welcome pm72fl,

I guess this vibration sensation isn't too uncommon from what I have gathered. Mine started in my legs but is now throughout the entire body. I'm just growing accustomed to it. Did Mayo give you any explanation for it at all ? We seem to have many of the same diagnoses you and I. Thanks for your input.

Janet

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Psalm, Mayo pretty much told me it was a part of autonomic neuropathy. I also get muscle twitches or fascilitations as they call them. Its not just the occasional eyelid twitch, this is everywhere! If I sneeze, I create some kind of muscle twitch frenzy in my chest and belly too! I know it prob sounds ridiculous but it happens everyday. :/ Crazy stuff!

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Thanks for the response pm72fl. I thought it might be something along those lines. It wasn't such a noticeable problem for me when I was at Mayo last so I didn't mention it but had planned on asking about it the next time. I get the muscle twitches and other odd sensations as well. Crazy stuff that's for sure.

Janet

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  • 1 month later...

I never took the nortryptine. Still having the symptoms. One doc said gabapentin would be a good option but was prescribed the nortryptaline. I have POTS/dysautonomia (low Bp and high pulse) . Mayo clinic called these fasiculations and current feeling Central sensitization (overactive nerves etc). All sudden onset...Seem to be related to my gut. Ie took a probiotic and fire and faciculation a worsened. Trying to decide right now between nortryptaline and Klonapin. I need something to calm these nerves. I am anti medicine so I have tried magnesium and everything natural and nothing has worked. I hope you all have gotten relief!

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