mjan Posted August 1, 2009 Report Share Posted August 1, 2009 What I mean is I can get internal tremors...you cannot SEE them..but I can FEEL them. Told one nuerologists and he answered.. "Well I believe that YOU believe you have internal tremors."When I told the POTS doc he said to me.. "I bet people make you believe you are crazy.. well.. you are not crazy." He DOES know and believe in internal tremors. I even get him when I lay down on my side..my head shakes INSIDE only.. and wakes me up..go figure. He says its autonomic related..hmm..but why? What the heck is going on. I am NEW to all of this. So.. sometimes my abdominal muscles just move up and down ..sometimes reminds me of when I was pregnant. Yesterday my right arm just had tremors for a few mins then stopped. Or a finger will shake.Anyone else? IS this autonomic related..like a chemical reaction..or lack of a chemical..or what? IS there anything to do for it?I never know which doc to tell this stuff too. My dysautonomic doc is not going to follow me per se..but remain as a consultant to the other docs...unless something major changes with my condition. Thanks...Jan Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted August 1, 2009 Report Share Posted August 1, 2009 HI Jan,Don't feel alone with these, I have the exact same things going on and was treated the same way by my docs. After almost 4 years of this going on it doesn't even bother me anymore, you'll just find me in bed relaxing once they start. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted August 1, 2009 Report Share Posted August 1, 2009 same with me, also l when i smile a lot of facial tremors. Left side of face goes numb also like a stroke and will droop. in the belly i'd swear i had a baby in there at times. lol! bellamia~ Quote Link to comment Share on other sites More sharing options...
mjan Posted August 1, 2009 Author Report Share Posted August 1, 2009 Thanks for responding. I know its not a big deal..have had it for years. But just wondering if its more from Autonomic stuff then my other problems. Just trying to figure out what is from what. I was seeing an MS doc and thought it was related to MS.I guess with any neurological or autoimmune condition.. many overlap. Also.. when I have TERRIBLE muscle fatigue that comes on suddenly and feels like my arms/legs weigh a ton...could that be a chemical problem?? Is that treatable? I am ony on Clonidine when I get tachy.Once I am done with all the testing I am going through (with other conditions) I will return to my nutritionist. He is amazing.. can tell if i am toxic.. or missing a nutrient and he builds up my system. He has an unbelievable evaluation tool...and can "test" your meds to see if they are making things worse..like side effects..and compliment the med so your system works more efficiently. Thanks for all responses...Jan Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted August 1, 2009 Report Share Posted August 1, 2009 Hi Jan,I can relate. I don't have this happen as often as I did when I first developed dysautonomia, but this is what I experienced...- A trembling or quivering feeling in the base of my head where my head meets my neck (but deep inside at the actual junction); I described it like there were wind-up teeth chattering back there!- An abdominal trembling that occurs on bad autonomic days with eating; almost like my insides are so over-stimulated and stressed by digestion that they are shaking. It sometimes extents to my extremities, and if someone lays next to me they can sometimes feel it. I don't know what to make of it, but it's always good to hear others experience similar things though.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
janiedelite Posted August 1, 2009 Report Share Posted August 1, 2009 An abdominal trembling that occurs on bad autonomic days with eating; almost like my insides are so over-stimulated and stressed by digestion that they are shaking. It sometimes extents to my extremities, and if someone lays next to me they can sometimes feel it.I have this abdominal tremor too, mostly on my bad days. Although I get twitches and fasciculations random places when I'm really POTsy. Quote Link to comment Share on other sites More sharing options...
gertie Posted August 2, 2009 Report Share Posted August 2, 2009 I don't have them as often as I used to but when Ido they seem to last all day. I have felt like my arms & legs have been shaking all day but when I hold out my hands to show my DH they are not actually trembling it just feels like it. I have had the feeling in my head also, usually at night. I feel sure it is ANS related but that doesn't really make me feel any better. If the trembling is still going on at bedtime I usually take an Ativan (generic). Wish I could be more help. Quote Link to comment Share on other sites More sharing options...
mjan Posted August 2, 2009 Author Report Share Posted August 2, 2009 I don't have them as often as I used to but when Ido they seem to last all day. I have felt like my arms & legs have been shaking all day but when I hold out my hands to show my DH they are not actually trembling it just feels like it. I have had the feeling in my head also, usually at night. I feel sure it is ANS related but that doesn't really make me feel any better. If the trembling is still going on at bedtime I usually take an Ativan (generic). Wish I could be more help.NO you have helped. I wish I had known this long time ago. My husband had seizures and when I woke up from a sound sleep to shaking ...thinking it was HIM. It was still.ok.. so go back to sleep. Then.. it happens again. Many doctors later ...they think I DO have seizures.. So.. now I just dont care. Its more when I am stressed anyway..thanks for your responseJan Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted August 3, 2009 Report Share Posted August 3, 2009 Ever taken your basal temperature when your like that?Trembling of all kinds is common with POTS - which is characterised as a condition where in many cases the nerve activity is increased during orthostatic stress - (elevated MSNA or elevated compensatory epinephrine) resulting in a trembly shaky feeling, usually accompanied with raynauds and peripheral vasoconstriction and sometimes a cold feeling. High Norepinephrine, low neuronal nitric oxide and elevated epinephrine will all do it - some are reflex mechanisms to maintain circulation and blood pressure, others might be the underlying problem. Try excessive rehydration - you might be surprised how effective that is for this. Quote Link to comment Share on other sites More sharing options...
HoudiniCat Posted August 3, 2009 Report Share Posted August 3, 2009 Count me in. I can get the all-over body trembling/quivering or get it in specific places -abdominal spasms, twitching hands/fingers, jumpy muscles in my back or legs. Not much to do about this. It still happens but I barely notice it anymore. Quote Link to comment Share on other sites More sharing options...
Megan Posted August 6, 2009 Report Share Posted August 6, 2009 I get this, too. Sometimes it turns into a muscle spasm that other people can actually observe, sometimes not.Meg Quote Link to comment Share on other sites More sharing options...
Lizzegrl Posted August 6, 2009 Report Share Posted August 6, 2009 I always have external hand tremors of late, and pretty much have been told I twitched some part of my body constantly since birth!! LOL. I"m now 41 and a doctor finally tells me ohh yea, that is from POTs too. ;0) K well, now I know that. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted August 6, 2009 Report Share Posted August 6, 2009 Just had the worst case of the shakes a few minutes ago! I get shakes a lot, and a lot of abdominal tremors and twitches along with severe pain. I have no idea how to make it better, although based on some of the tips I see here I am downing gatorade as fast as I can! Quote Link to comment Share on other sites More sharing options...
erik Posted August 6, 2009 Report Share Posted August 6, 2009 Yes! I have EXACT SAME "internal" tremulousness... very frequently (almost always now) but mostly mild in my case and was considering posting a question about this myself! So glad you brought it up.Sometimes I can make it slightly visible in certain muscles by holding things a certain way but not always (a neurologist trick I read about). I wondered if it might show up on a "nerve conduction" test or EEG but maybe not... or in some hormone/catecholamine measure (like issues ramakentesh mentions). For now, I just consider myself fortunate to be getting a TTT as opposed to a free bed in an asylum, though the latter sounds tempting at times Quote Link to comment Share on other sites More sharing options...
mjan Posted August 7, 2009 Author Report Share Posted August 7, 2009 Yes! I have EXACT SAME "internal" tremulousness... very frequently (almost always now) but mostly mild in my case and was considering posting a question about this myself! So glad you brought it up.Sometimes I can make it slightly visible in certain muscles by holding things a certain way but not always (a neurologist trick I read about). I wondered if it might show up on a "nerve conduction" test or EEG but maybe not... or in some hormone/catecholamine measure (like issues ramakentesh mentions). For now, I just consider myself fortunate to be getting a TTT as opposed to a free bed in an asylum, though the latter sounds tempting at times Actually it was the neurologist who was conducting the EMG tests on both arms..and upper back (not sure why there). IT was positive for both with the right side weaker. I told him my legs are worse as far as neuropathy and then mentioned that I have tremors sometimes INSIDE my head that wake me UP!! (besides other areas).He said..I believe that YOU beleive you have tremors that no one can SEE. But as soon as I told the Autonomic doc..he KNEW all about it..(he did not explain it though) and said.. I bet others think you are crazy...well you are not crazy.OK..but what the heck causes it? That is all I ask. Maybe there is something one can do to prevent them.Jan Quote Link to comment Share on other sites More sharing options...
erik Posted August 25, 2009 Report Share Posted August 25, 2009 Also.. when I have TERRIBLE muscle fatigue that comes on suddenly and feels like my arms/legs weigh a ton...could that be a chemical problem?? Is that treatable?Sorry for late response. For a totally dead muscle fatigue feeling like you describe... I would ask a doc if it could be an intermittent (or borderline) acetylcholine thing. Like a myasthenia gravis sort of deal. I know some take Mestinon for POTS, which one could think of as an "SSRI" for acetylcholine rather than seritonin. Found mention of it in a few places:DI Net: What Helps pageA 2005 discussion hereOver on medhelpIt is in some research trials as well. I think my doc was considering this for me at one point... I don't know the ups & downs of it... all meds have complications, of course. I'd hate to recommend something that ended up not working well, but it might be worth considering & maybe resurrecting a discussion of that med on this forum? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted August 26, 2009 Report Share Posted August 26, 2009 It works slightly differently for POTS - it provides increased receptor transduction of the parasympathetic nervous system at two points while also acting on sympathetic receptprs that are involved in sympathetic response to baroreflex unloading. In theory it should work in all forms of POTS where there is increased sympathetic drive. Quote Link to comment Share on other sites More sharing options...
tilly Posted August 26, 2009 Report Share Posted August 26, 2009 Hi everyone ... i get tremors and i also get these fluttering feelings in various muscles in my face or legs mainly .... but the strangest of them all is the tremors in the centre of my chest ...... they seem to come and go about every couple of months ... I told my doctor and he said it's anxiety ! huh! ... my h has felt them he put his hand on my chest and it was vibrating .... i told my cardio and he said what is you heart doing when this happens ... i said it's not going fast bc i have felt my pulse when it happens and it seems steady and regular ........ i had thought it was related to arrythmias ......tilly Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.