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Neurology (Expert Forum)
Feels like I'm vibrating!
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
Feels like I'm vibrating!
by smg2, Mar 22, 2007 12:00AM
I have started feeling like my body was "vibrating" - not spasms, or jerking - like there is a vibrator in my body. Feel it most in the back, but everywhere else too. Mostly happens when I am sleeping or relaxed - it will wake me up, but has happened once when standing. Does not hurt - just very disconcerting. What is it? Who do I go to for it? What words do I use to check the internet?
Doctor's Answer
by Forum-M.D.-SH, Apr 10, 2007 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms that you describe of 'vibrating' is very atypical and does not fit in a neurologic disease that I am aware of. That being said, some people with numbness or other sensory complaints associated with multiple sclerosis, seizures or even TIAs (transient ischemic attacks) have described such strange sensory phenonenon. I would suggest that you get an MRI of the brain with contrast to evaluate for a structural lesion (such as MS, stroke, tumor, etc). I would also suggest an EEG (brain wave test) to evaluate for any possible seizure activity. If the above test come back normal and you have been evaluated by a neurologist, I would suspect that your symptoms could also be due to stress/anxiety (although this diagnosis is only to be considered after the testing is done).
I hope this has been helpful.
The symptoms that you describe of 'vibrating' is very atypical and does not fit in a neurologic disease that I am aware of. That being said, some people with numbness or other sensory complaints associated with multiple sclerosis, seizures or even TIAs (transient ischemic attacks) have described such strange sensory phenonenon. I would suggest that you get an MRI of the brain with contrast to evaluate for a structural lesion (such as MS, stroke, tumor, etc). I would also suggest an EEG (brain wave test) to evaluate for any possible seizure activity. If the above test come back normal and you have been evaluated by a neurologist, I would suspect that your symptoms could also be due to stress/anxiety (although this diagnosis is only to be considered after the testing is done).
I hope this has been helpful.
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I am sorry to hear that this is happening to you, but for me-I am happy to have found you at some level.
THIS HAS BEEN MY SYMPTOM FOR OVER 2 YEARS NOW AND YOU HAVE FINALLY DESCRIBED IT TO-A-T!
But yes, you are not alone. Everything you say about it is like I am reading my own thoughts and experiences and I have never found anyone who understands it.
I have seen about 9 doctors-of varous specialties-and none of them have answers. I have noticed that stressful situations can make it come on. Originally it started with only when I was lying down-this lasted for about 6 mo. It always seemed to be in my back, but then, it finally has become my whole body; but the epicenter, if you will, is the lower back.
I have had contrast MRI studies of the brain, c, t and l spine and nothing there indicates something weird, aside from 1 thing.
I do have typical MS lesions in the brain and in the C-Spine. They think that I have Lyme disease instead of old fashioned M.S.-but who knows.
I know the hell of this weird symptom, believe me, I do.
I don't mean to piggyback your comments but I can associate with the vibrating feeling except it is located in my head. I had a recent episode which was like my brain shaking, I can't describe this very well but it was a momemtary shudder in my head and I had to steady myself, I got an awful full feeling in my face afterwards. I am awaiting an MRI scan, it could take two months for this. But when I get these feelings, it feels afterwards like the world it slanted and I'm walking up hill on straight ground, anyone else got these sort of episodes? I had neurological tests, and they are normal so even the Docs are scratching their heads and holding out for an MRI scan to show what it is. I have a history of Sarcoidosis on the lung, wondering could there be neuro involvement?
Best regards
Jane
P.S. Do you drink diet soda by any chance? An alternative dr. scolded me for the number of diet drinks I consume on a daily basis, and warned me of the side effects associated with aspertame (sp?) Just a thought.
It certainly is not helping us.
It started as an echo in my chest, then, became (epicenter low back) full body. While all of my other symptoms have for the most part subsided, this remains-but-is becoming less and less frequent.
I have never taken psychoactive drugs.
Hope that my contribution helps, and, despite a growing opinion-I am not playing doctor.
I am just smart and educated.
Peace.
I have never taken anti depressants, but I was prescribed them for palpitations once. Can your body just react more nervously as you get older?
All the best
J
For 10 years , except for the last three up until yesterday I have been going to dr's under going test after test after test, i can tell you this , it is not lyme .
I am negative for lyme disease more than once , negative for lupus more than once tsh for the last 10 years normal !DO NOT LET THEM SAY ITS FIBROMYALGIA ITS NOT !
However all they can find is , multiple brain lesions dx Possible relasping remitting MS but the lesions are never active .
I have Chiari malformation , I believe that is the culprit of the vibration.
I wll tell you why ...for three years I have done well up until now , now I am in the worsepain i have ever been in in the upper spine a pain you cannot describe not in the muscles , numbness tingling is back in the arms and hands , visionis getting screwy , and well the vibration is in my feet and legs and is most noticable after walking and it goes all the way to the buttocks , the doc said beore I told him anything just by looking at me and the way I was carrying my self you have chiari when I told him everything he said , i do not know if is worse and now we have a nerve study scheduled and mri .... As wellwas very intrestred about the vibration .
My advice Find a good Neurologist ....i you have pain in upper spine , if coughing or straining causes the most God awful pain in your head you have ever experienced in your life first bend your head forward it wil relieve it , second tell your doc, ! upper body weakness and pain 9 times out of ten with the vibration it is chiari malformation , find a good Neurologist .and internist not a family doctor
Good Luck
Ps it took me about ten neurologist and more internist before i got help !
Leigh
I can relate to the parinoid calls at 3am to those you love and a unexpected trip to the ER only to get a discharge note with no instructions or answers. My family is giving up on me....LOL but I still have a good sense of humor despite my terror. Here is my story, maybe you can find something that may be of help.
Last March (2006) I started to experience symptoms of numbness, tingling, burning and severe weakness in my thigh and calf muscles. Simmultanously I also got carpel tunnel in both wrists. I was very sick from the pain found that sitting relieved my symptoms briefly but eventually they would return when I attempted to walk. Gradually I began to get sicker and my neuroligist told me after several blood tests that I had the coxsackie virus, but he was not sure the coxsackie was responsible for the neuropathies. After 5 hospital vistis including the Cleveland Clinic, 2 muscle biopsies, MRI's, CT scans, spinal tap and several rounds of rehab, all testing was negative except for original bloodwork which showed my immunogammaglobulins were out of wack and my ANA was slightly elevated. It was concluded by a neuromuscular specialist that I suffered from a post viral syndrome and she felt that I would slowly recover within a year . I am not confident that this is what caused these symptoms and am concerned that something is being overlooked. The diagnosis given was purely based on exclusion. I was using crutches, and a walker for the first 5 months and then for the final part of the year (7 months)I was in a wheelchair and unable to walk. I started walking in mid-December and have continued successfully without a great deal of pain until now. The past few days I feel the symptoms cropping up again and I am not sure if it is normal for this to happen after such a long illness and recovery. The weather is very damp here and It may be just a temporary setback, but I am searching for anyone who may have had this or knows someone who did. I need advice on how to deal with the pain. Can I recover from these neuropathies? Thanks all.
Scared to pieces.
Not all the time tho' I have some neck problems..bone spurs DDD and junk going on. I think the docs blame all my symtoms on this. Maybe they are righ I just dont know anymore.
Anyway I'm booked for an MRI on the 14th - it may bring up something - although I had an MRI before and it was perfectly normal. It is a hard thing to describe, but seizure or vibrations, it is scary when it happens.
The neck thing is interesting too, because I always wake with a pain in my neck and can never get my head into a comfortable position at night - I regularly buy new pillows, special ones, fluffy ones, orthpediac it doesn't seem to make a difference.
Regards
J
I've been having strange symptoms since November, and it looks like my diagnosis going to be Lyme Disease. I came up negative on the ELISA test, but I had 3 positive bands on the Western Blot.
I have my first appointment with a Lyme Doctor on Monday.
Did you have your MRI yet? Did it show anything?
I eat healthy
I take no meds
no alcohol or caffine
no smoking or drugs
no diet drinks of any kind
I do have arthritis in joints and spine
i have something that is affecting my muscles, getting weaker in legs
I pray someone is friends with a doctor and ask him or her to read these posts and try to help a bunch of people all at once. i have a suspicion it is a virus that attacks the muscles or nerves. if some one can figure this out i will give them a reward!
Well atleast it is acknowledged ....
I believe it has something to do with the chiari malformation . Just my opinion . I personal have not had a viral infection , just brain lesions and a sagging brain , i like to say i just have such a large brain it cannot all fit into my skull so it is falling out .
Better to laugh than cry i suppose .
I just googled 'vibration in abdomen' hoping to find a good resource for this, but instead this thread is the only thing I have found. That worries me.
At first, last week, I found myself reaching or my cellphone (which I keep set to vibrate), but it wasn't. Then this week when I began to be able to isolate the sensation, I started to think that it had something to do with how I was standing or something....like maybe the joint in my hip or knee was stiff and 'creaking' or something. (I'm 48, BTW)
Today, I started wondering if maybe the sensation has something to do with my breathing. I am just recovering from bronchitis, and I was hoping that maybe my lungs were wheezing at a very low frequency that was being felt in my abdomen. But I can tell that its not related to my breathing at all.
Is there a name for this? I really would like to find out what the heck is going on, and hopefully make it go away. I don't think I can get used to this....
I too find it a difficult thing to google, maybe we are using the wrong words, although I can associate with a lot of you here, so we are certainly able to vocalise the symptom.
All the best
J
I have never said anything to anyone before because I thought it was all in my head...now I am learning that there were a lot of things I should have not kept to myself as I start to see my Neuro.
Going for MRI's and MRA in two weeks. I have to say that I am scared to death!
Thank you!
Prior to 2002 I never had any major medical problems, but towards the end of year I began experiencing fatigue and amenorrhea. Then in August of 2004, I became completely constipated, and until February 2006, I was unable to have any bowel movements on my own without the use of a large volume water enema. During this period, I was hospitalized on a couple of occasions with impactions. Oddly enough, I felt minimal discomfort from my condition and wouldn’t have complained of many GI symptoms even when medical personnel were taken aback by the amount of stool in my colon. I saw several physicians during this time and underwent a number of tests, many of which were not very conclusive. For example, I had three gastric emptying studies, one showed my gastric emptying to be fast, another normal, and a third slow. I also had a follow-through study which indicated delayed transit time in both my small and large intestines, was diagnosed with an internal prolapse based on defecography, and was told that I had a pelvic floor dysfunction. I failed treatment or was unable to tolerate nearly every prescription and over the counter therapy available for constipation and motility disorders, and I became very light-headed with the use of any osmotic agent. I also frequently began feeling “woozy” (I can best describe it as the feeling of being on an elevator that is moving) when I ate. Furthermore, I developed abnormal blood glucose patterns, having both high and low blood glucose readings, as well as rapid drops in blood glucose. These blood glucose problems began within the year before the onset of my severe constipation, and I have no endocrine-based reason for these abnormalities. I always have a normal fasting blood glucose, but once I begin eating I experience both high post-prandial blood glucose readings and hypoglycemia several hours after my morning meal. My situation does not quite fit one of reactive hypoglylcemia, and my blood glucose cannot be controlled with changes in diet.
After about a year of giving myself large volume enemas, I began to get extremely weak from doing this twice each week. At this point, it was pointed out that I had never tried Senna, and I began taking Senna daily. After nearly 18 months of only having bowel movements with an enema, I began having spontaneous bowel movements with the Senna. They were very small and occurred several times throughout each day, but this was a big change nonetheless. After a couple of months I tapered myself off the Senna, and from April 2006 through September 2006 I had small spontaneous bowel movements several times each day. In late September 2006, I again stopped having bowel movements for a period of about three weeks, and following hospitalization, enemas, and GoLytely, I have recently begun to again have multiple small bowel movements throughout the day.
Thus far, my story is not very impressive, so now I will explain what it is that makes my situation unique. During the year and a half that I was unable to have any spontaneous bowel movements, there were two occasions on which I began having bowel movements for about one week, both of which followed having my neck adjusted by a chiropractor or worked on by a physical therapist. During this period, and becoming increasingly more intense after beginning the Senna, I began experiencing a very deep “pulling sensation” down the back of my neck and frequently feeling what I describe as a “floaty” feeling or a sensation like I am in a “surreal” type of state. Thinking there was something wrong with my neck, I had numerous MRI’s, x-rays, and physical therapy. Although it seemed hard to believe at first, I began to realize that these feelings in my neck and head were associated with my having bowel movements, digesting food, or having gas. During the three weeks in September 2006 when I was not having bowel movements, I could not believe how good my head and neck felt. I was able to carry out normal activities, attend all my classes (I am a graduate student), and had neither the pulling sensation in my neck or floaty, surreal feeling in my head.
This past summer of 2006, I was evaluated for biofeedback therapy, and it was suggested that my symptoms could be some type of “vagal over-stimulation that was being transmitted up my body rather than downward like it should have been,” or due to a physical connection between my neck and pelvic floor through the connective tissues. This was the first time that anyone ever seemed to think that the symptoms and odd connection between my intestinal motility and neck and head made sense. I only attended a couple of biofeedback sessions, which seemed to irritate the symptoms even more, before needing to postpone any further treatment due to returning to school.
Currently, I am unable to function due to my symptoms and am at a complete loss as to what to do to alleviate them. Since regaining some bowel motility following my ileus-like state in September 2006, my symptoms are worse than ever. I am unable to attend classes or do simple errands because I feel so poorly. Any type of activity in my GI system, especially eating or the hours prior to bowel, causes a feeling in my head that I can best analogize to the following: It is a feeling like my head is in a “magnetic field” or a “vacuum;” I feel as though I am off-balance and walking on a teetering ship. It is often accompanied by a pulling and clamping sensation that is especially strong down my neck but can extend from my face/jaw down my entire back and through my legs. I also frequently begin “shivering” rather intensely after eating or prior to having a bowel movement or passing gas, although I do not feel cold, and on many occasions I become somewhat flushed or red in the face when experiencing the symptoms I have described. My blood pressure has never been abnormally low during these episodes, although it has on several occasions been higher than usual; I don’t know whether this is a reaction is the symptoms or related to their cause.
In general, I wake up feeling normal, but once I break the overnight fast and beginning eating breakfast, my symptoms begin. I feel woozy to varying extents while eating breakfast each morning, but my most interfering symptoms begin within a couple hours of my first meal. I begin to experience the previously described symptoms in my head and neck, usually to the point that I cannot continue with my usual activities. Shortly after these symptoms begin, I start having small bowel movements. I have several small bowel movements throughout the day, but I am completely unable to function. The bowel movements are usually approximately 1 tsp. to 1 tbsp. in size; I am unable to have normal sized bowel movements despite high dietary fiber and water intake. Often times, even if these small bowel movements are in my rectum and I can feel them with my finger, I am unable to evacuate them. Some days releasing a small amount of stool causes the feelings in my head and neck to lessen while other days it causes them to intensify, and I often get a numb sensation in my cheeks and neck in addition to the other symptoms. These symptoms are definitely not related to straining with bowel movements. If I feel functional at some point during the day, it is usually in the late evening once I have stopped having bowel movements and have not eaten for a number of hours.
It is as though either my GI tract is able to function or I am able to function. I feel as though I am getting some type of systemic stimulation rather than my body being able to confine motility stimulation to my GI tract. I can tell very accurately if and when I am going to have a bowel movement or pass gas based on these feelings in my head and neck; I feel basically no abdominal sensations at all. If I take any type of laxative or motility agent, my symptoms are even further magnified although I may have larger bowel movements from them. After a year and a half of enemas and occasional laxative use, it is as if my body has become hypersensitive to any type of bowel stimulation or motility. Finally, I have found that particularly in the morning, I am frequently experiencing large, rapid drops in my blood sugar following the passage of even the smallest amount of stool. However, I would like to emphasize that any symptoms I experience related to low blood sugar are independent of the neck and head bowel-related symptoms.
The last interesting piece in my situation is that my symptoms are also influenced by progesterone. Because I am amenorrheic, I have an estrogen replacement patch and take progesterone every few months to initiate menstruation. During the time that I am taking the 7 day course of progesterone, my symptoms are lower in intensity. I don’t know whether this is due to the progesterone itself or because the progesterone makes me more constipated and decreases my bowel function. Once I stop the progesterone I usually have a couple of days of larger, more frequent spontaneous bowel movements and the symptoms I have described re-intensify.
In addition to the problems described in depth above, I also have extremely low ferritin levels and was diagnosed with osteoporosis at age 21.
Prior to 2002 I never had any major medical problems, but towards the end of year I began experiencing fatigue and amenorrhea. Then in August of 2004, I became completely constipated, and until February 2006, I was unable to have any bowel movements on my own without the use of a large volume water enema. During this period, I was hospitalized on a couple of occasions with impactions. Oddly enough, I felt minimal discomfort from my condition and wouldn’t have complained of many GI symptoms even when medical personnel were taken aback by the amount of stool in my colon. I saw several physicians during this time and underwent a number of tests, many of which were not very conclusive. For example, I had three gastric emptying studies, one showed my gastric emptying to be fast, another normal, and a third slow. I also had a follow-through study which indicated delayed transit time in both my small and large intestines, was diagnosed with an internal prolapse based on defecography, and was told that I had a pelvic floor dysfunction. I failed treatment or was unable to tolerate nearly every prescription and over the counter therapy available for constipation and motility disorders, and I became very light-headed with the use of any osmotic agent. I also frequently began feeling “woozy” (I can best describe it as the feeling of being on an elevator that is moving) when I ate. Furthermore, I developed abnormal blood glucose patterns, having both high and low blood glucose readings, as well as rapid drops in blood glucose. These blood glucose problems began within the year before the onset of my severe constipation, and I have no endocrine-based reason for these abnormalities. I always have a normal fasting blood glucose, but once I begin eating I experience both high post-prandial blood glucose readings and hypoglycemia several hours after my morning meal. My situation does not quite fit one of reactive hypoglylcemia, and my blood glucose cannot be controlled with changes in diet.
After about a year of giving myself large volume enemas, I began to get extremely weak from doing this twice each week. At this point, it was pointed out that I had never tried Senna, and I began taking Senna daily. After nearly 18 months of only having bowel movements with an enema, I began having spontaneous bowel movements with the Senna. They were very small and occurred several times throughout each day, but this was a big change nonetheless. After a couple of months I tapered myself off the Senna, and from April 2006 through September 2006 I had small spontaneous bowel movements several times each day. In late September 2006, I again stopped having bowel movements for a period of about three weeks, and following hospitalization, enemas, and GoLytely, I have recently begun to again have multiple small bowel movements throughout the day.
Thus far, my story is not very impressive, so now I will explain what it is that makes my situation unique. During the year and a half that I was unable to have any spontaneous bowel movements, there were two occasions on which I began having bowel movements for about one week, both of which followed having my neck adjusted by a chiropractor or worked on by a physical therapist. During this period, and becoming increasingly more intense after beginning the Senna, I began experiencing a very deep “pulling sensation” down the back of my neck and frequently feeling what I describe as a “floaty” feeling or a sensation like I am in a “surreal” type of state. Thinking there was something wrong with my neck, I had numerous MRI’s, x-rays, and physical therapy. Although it seemed hard to believe at first, I began to realize that these feelings in my neck and head were associated with my having bowel movements, digesting food, or having gas. During the three weeks in September 2006 when I was not having bowel movements, I could not believe how good my head and neck felt. I was able to carry out normal activities, attend all my classes (I am a graduate student), and had neither the pulling sensation in my neck or floaty, surreal feeling in my head.
This past summer of 2006, I was evaluated for biofeedback therapy, and it was suggested that my symptoms could be some type of “vagal over-stimulation that was being transmitted up my body rather than downward like it should have been,” or due to a physical connection between my neck and pelvic floor through the connective tissues. This was the first time that anyone ever seemed to think that the symptoms and odd connection between my intestinal motility and neck and head made sense. I only attended a couple of biofeedback sessions, which seemed to irritate the symptoms even more, before needing to postpone any further treatment due to returning to school.
Currently, I am unable to function due to my symptoms and am at a complete loss as to what to do to alleviate them. Since regaining some bowel motility following my ileus-like state in September 2006, my symptoms are worse than ever. I am unable to attend classes or do simple errands because I feel so poorly. Any type of activity in my GI system, especially eating or the hours prior to bowel, causes a feeling in my head that I can best analogize to the following: It is a feeling like my head is in a “magnetic field” or a “vacuum;” I feel as though I am off-balance and walking on a teetering ship. It is often accompanied by a pulling and clamping sensation that is especially strong down my neck but can extend from my face/jaw down my entire back and through my legs. I also frequently begin “shivering” rather intensely after eating or prior to having a bowel movement or passing gas, although I do not feel cold, and on many occasions I become somewhat flushed or red in the face when experiencing the symptoms I have described. My blood pressure has never been abnormally low during these episodes, although it has on several occasions been higher than usual; I don’t know whether this is a reaction is the symptoms or related to their cause.
In general, I wake up feeling normal, but once I break the overnight fast and beginning eating breakfast, my symptoms begin. I feel woozy to varying extents while eating breakfast each morning, but my most interfering symptoms begin within a couple hours of my first meal. I begin to experience the previously described symptoms in my head and neck, usually to the point that I cannot continue with my usual activities. Shortly after these symptoms begin, I start having small bowel movements. I have several small bowel movements throughout the day, but I am completely unable to function. The bowel movements are usually approximately 1 tsp. to 1 tbsp. in size; I am unable to have normal sized bowel movements despite high dietary fiber and water intake. Often times, even if these small bowel movements are in my rectum and I can feel them with my finger, I am unable to evacuate them. Some days releasing a small amount of stool causes the feelings in my head and neck to lessen while other days it causes them to intensify, and I often get a numb sensation in my cheeks and neck in addition to the other symptoms. These symptoms are definitely not related to straining with bowel movements. If I feel functional at some point during the day, it is usually in the late evening once I have stopped having bowel movements and have not eaten for a number of hours.
It is as though either my GI tract is able to function or I am able to function. I feel as though I am getting some type of systemic stimulation rather than my body being able to confine motility stimulation to my GI tract. I can tell very accurately if and when I am going to have a bowel movement or pass gas based on these feelings in my head and neck; I feel basically no abdominal sensations at all. If I take any type of laxative or motility agent, my symptoms are even further magnified although I may have larger bowel movements from them. After a year and a half of enemas and occasional laxative use, it is as if my body has become hypersensitive to any type of bowel stimulation or motility. Finally, I have found that particularly in the morning, I am frequently experiencing large, rapid drops in my blood sugar following the passage of even the smallest amount of stool. However, I would like to emphasize that any symptoms I experience related to low blood sugar are independent of the neck and head bowel-related symptoms.
The last interesting piece in my situation is that my symptoms are also influenced by progesterone. Because I am amenorrheic, I have an estrogen replacement patch and take progesterone every few months to initiate menstruation. During the time that I am taking the 7 day course of progesterone, my symptoms are lower in intensity. I don’t know whether this is due to the progesterone itself or because the progesterone makes me more constipated and decreases my bowel function. Once I stop the progesterone I usually have a couple of days of larger, more frequent spontaneous bowel movements and the symptoms I have described re-intensify.
In addition to the problems described in depth above, I also have extremely low ferritin levels and was diagnosed with osteoporosis at age 21.
Last week it started again. It's pretty constant but gets more intense at times. Trying to explain to a doctor that your head is vibrating inside while it's not actually moving does make one feel crazy!
Unfortunately I no longer have medical insurance, so visiting a nurologist is pretty much out of the question for now...
Regarding your low blood sugar, how do you know that isn't related to your stomach also? I have been having more episodes of low blood sugar since my gastroparesis has gotten worse, most likely due to the uneven/delayed time it takes for the food to leave my stomach, be absorbed by my small intestine and enter my bloodstream. If you have delayed stomach emptying that could affect your blood sugar levels.
If I were you I would try to get in a question to the forum neurologist, though it will probably be few weeks, or go straight to a univ. hospital/major medical center and see if they can figure it out. If you are in graduate school maybe you are near a good one.
I also experienced a link between fluctuating hormones (at time of ovulation every single month) and acute exacerbation of all my symptoms. You said you were no longer having periods at 25 or 27. What do the doctors think the cause of this is? Have you been worked up for thryoid and other endocrine disorders? I went through an early menopause at 43 (not exactly premature ovarian failure, but earlier than the norm) and I believe it is due to my autoimmune autonomic neuropathy.
I'm not sure I understand the connection between your neck and bowel problems (something to do with the vagus nerve?)--I'd have to go back and read what you wrote--but possibly, if the vagus nerve is involved, you do have some type of autonomic neuropathy problem. Autonomic dysfunction is complicated and hard to diagnose-or at least to identify a cause in every case, so maybe if you had the chance to explain your symptoms to an autonomic dysfunction neurologist he/she would be able to figure it all out.
Regarding autoimmune dysautonomia, it looks like you have other autonomic dysfunction going on as well if there were abnormalities-however mild-in your autonomic lab values (in addition to your gastroparesis/stomach/bowel problems). I was told at Mayo just a couple weeks ago that most autonomic neuropathy is autoimmune in nature (whether primary or secondary to some other disease), so I guess it is not surprising that they think yours is as well-even if they can't identify a cause. I don't know if you also had blood work done to try to identify the cause, but I had a lot done (including the neuronal nicotinic acetylcholine receptor-or whatever it is called-that I read is positive about 40% of the time in autonimmune autonomic neuropathy (AAN)), and ALL my blood work was negative. Still, the doctor told me that she thought I had autoimmune autonomic neuropathy. I read that the higher the titer the worse the autonomic dysfunction-directly correlated-so the fact that mine was negative made me feel a little better, though i imagine the titer can fluctuate just like any antibody level can.
Tell me, have they suggested you do anything to treat what you have (immunosuppressive therapy, IVIG, etc.) other than to treat it symptomatically? Do you have any problems with swallowing, your bladder (urge incontinence or urinary retention), heat intolerance (if you have lost any sweating function), slow or rapid pulse, orthostatic intolerance, etc.? Every single article I have read on autoimmune autonomic neuropathy (AAN) lists urinary retention (not urge incontinence-which I have) as a problem, but I was told at Mayo one could have either. And do your symptoms fluctuate as mine do? I imagine that is where the autoimmune factor comes in. I still believe my autonomic neuropathy is secondary/part of something else and not a primary autonomic neuropathy (as I also have mild motor, sensory and other stuff), but nothing has shown in the blood work, MRIs or LP, so I guess time will tell.
Thank you for the correspondance. I did see now that Zelnorm was taken off the market. I found it interesting that it was removed due to cardiac rhythm abnormalities because the time that I tried taking it I felt so many arrythmias and irregular heartbeats that I stopped taking it. In addition to the GI problems, I have several other symptoms. All of my symptoms flucuate and I have "tolerable days" and days that I can't function at all. Some days one symptom is worse and other days it's another. In addition to the GI symptoms, I experience sudden "attacks" of wooziness and a feeling like I am in a magnetic field or something is vibrating inside my body. I get irregular heart rhythms and boughts of extreme fatigue. I have had very bad reactions to every medication that I have ever tried, so I don't take any medications except estrogen and progesterone replacement (I also developed amenorrhea at the beginning of all my symptoms and was later diagnosed with osteoporosis). I also completely stopped sweating at the onset of my symptoms and I have a very difficult time in both hot and cold temperatures. IVIG was suggested at one time, but I never received it. Otherwise, not much has been suggested - I tried and had a bad reaction to pyridostigmine. The neurologists have also suggested very low doses of several other neurological medications to be use off-label, but I have not tried any of them yet due to my past medication experiences. I have never had the blood work receptor test you mentioned, but I do have an elevated ANA, rheumatoid factor, and lipase levels 3-4 times the upper limit of normal. I also have incredibly low ferritin levels and other iron labs, but no one has been able to explain this even though I am not loosing blood in my stool and no longer menstruate on a regular basis. What I actually did last week was consult an acupuncturist because I feel that I am out of western medicine options and the doctors don't seem to have a good grasp of what is happening to my body. I want to procede slowly, but the acupuncturist felt that she would be able to help. Although I am hesitant to get too excited, she said that from an eastern understanding my symptoms make sense to her. I am praying that the acupuncture will have a positive effect and help me to become more funcitonal because right now I am frustrated and scared and live minute-to-minute at the hand of my autonomic symptoms. When did your symptoms first begin? How old were you and did you have any event that seems to trigger them? Are you able to work - have you found anything to relieve your symptoms? What MD did you see at the Mayo Clinic? I saw one with whom I was not impressed at the Mayo Clinic in MN. I look forward to reading your thoughts.
Now about sleep paralysis: everyone's brains are meant to release a chemical during REM sleep to keep us from acting out our dreams. Sleep walkers don't get enough, people like me who suffer from sleep paralysis release the chemical during partial consiousness and are AWARE that we are paralized. Does this sound like you? There's more (isn't there always). There are two types of SP: common and hallucinatory. Most people have an episode of SP in there lifetimes. Most will only have common. Some of us have hallucinatory. A symptom of both is feeling that you can't move and if you don't soon, you'll die. It sucks, but once you get used to it, it's just unconfortable, but managable. Some symptoms of hallucinatory can include seeing lights, hearing voices, VIBRATIONS, feeling that there is an evil presence in your room and other fun stuff. If this happens to you, feel better. It doen't mean that you have schizophrenia. It means that your are partially conscious and dreaming at the same time. Loads of fun. You get used to that too.
For me, SP is almost always accompanied by vibrations. My vibrations are strong and often accompanied by a buzzing feeling (sometimes the buzzing feeling stays with me for hours afterwards). Like many of you, I haven't found a doctor yet that will do anything beyond uttering something like WOW, that is odd! or something wholly unhelpful like that. Atleast we are not alone, though it sucks for all of us, doesn't it. Let me know if any of you suffer from SP too. Should be interesting if it is common amoung us.
I didn't realize you had so many different things going on. I can't remember, did you say you had gotten a diagnosis (or what do the doctors think at least)? The test I referred to regarding autoimmune autonomic neuropathy is the neuronal nicotinic aceylcholine receptor. I read that it shows up in about 40% of those with autoimm. autonomic neuropathy. Did you have a lot of blood work done to try to find the cause of your autonomic problems? All my blood work was negative, including the n-AchR; the doctors at Mayo aren't sure what is causing my autonomic dysfunction but said it is probably autoimmune in nature, and aren't sure if it is primary or is secondary to something else. Have you had MRIs and LP and what were the results?
My symptoms also fluctuate (day to day, even minute to minute). I think makes it even harder for others to understand the nature of what one deals with. One minute I don't feel that bad and the next I don't feel so well. I also have an irregular pulse (mine is slow-50s-used to be very fast before I got sick) and I feel faint a lot of the time (some kind of endocrine thing?) But I don't have BP issues (yet), however-no dizziness/orthostatic intolerance (tilt test normal). And I also have incredible fatigue as you do. I have to force myself to do just about everything I do. You said you stopped sweating early in your illness? Was it all over, patchy, on one side, or what? My symptoms started when I was 27 in '90. I lost the sweating function on the left side of my body back then (developed a left Horner's syndrome-very first thing I had). I don't remember anything preceding the Horner's (any infection or anything, but can't be sure), but later with the onset of new symptoms I clearly had a preceding viral or bad bacterial infection prior most times. Normally I rarely get infections (am very careful/wash my hands a lot), but 4-4 1/2 years ago I had a UTI, cold, and something with my stomach with high fever all in a row, and a couple months later my hair started falling out-mild but patchy-all over my body, and I still have this. Infections seem to be a triggering event for me and my dyasautonomia is probably autoimmune in nature, but not for certain. I don't have any problem with the cold (occasionally i suddenly get freezing cold, though), but most of the time I have this warm sick feeling in my chest, my heart pounds on that side) and I have an intolerance in general to heat (I had hypohidroris of left leg on QSART test, so possibly I have some hypohidrosis left over from the past left-sided Horner's). I also had a positive ANA, but the highest mine ever was was 1:160-a mild positive. Other antibodies normal, including RA factor. I have had a fluctuating mildly evevated calcium and they did a PTH level on me at Mayo, but calcium returned to normal. I can't find much information on the net on the effect on the different glands from autonomic neuropathy. Do you know much about this? Since you have had amenhorrea off and on I thought you might know something about the relationship to different hormones.
If you don't know what else to do next, then I guess acupuncture couldn't hurt. I don't know much about it, but I know there is legitimacy to it. Some MDs even perform it. You probably know a lot more about it than I. It's not something I've ever read up on.
I only work part time. (Are you still in grad school?) I do not feel well enough to work full-time. I live alone, have a house and yard to take care of by myself. Just getting through each day is very draining for me. Some days aren't so bad and other days I have significant pain from my gastroparesis and just feel ill/faint with all the chest symptoms I have.
As far as anything relieving my symptoms, well, I've been asking/hoping for "relief" for 13 years. I couldn't even get a doctor to believe that I was actually sick until December, so, no, I've gotten no treatment whatsoever for my symptoms (other than the gastroparesis which I was dxd with in August and then I started on meds for that. Eventually I got referred to Mayo-Jacksonville and thanks to the GP dx finally was taken seriously. I saw two doctors up there. I really don't want to mention any doctors' names online. I did like the female doctor I saw there (but not so much the other one; I didn't feel as though he cared a whole lot/indifferent/cold fish.). I did read several articles by the autonomic specialists up at Mayo-Rochester-Sandroni and Vernino (?) and the research they did on rabbits/mice with experimental automimmune autonomic neuropathy.
Right now I am trying to get a neurologist to see me. The one practice I called has told me that two of the doctors in that practice will not see me (after reviewing my records). Not sure if the others in the practice are willing to or not (??) She told me to follow up at Mayo. Yeah, right, I'm going to drive 500 miles each time to see a doctor! As if I haven't been screwed enough by doctors in the past, and now I'm going to be screwed in a different way. I get the feeling they don't want to touch me with a 10-foot pole because of the fact that I was dismissed for 13 years by doctor after doctor in this town as psychosomatic-as if that were MY fault. All they think about are lawsuits. I have no intention of suing anyone. The only agenda I have ever had was to get help/be believed, but that was apparently too much to ask. So I do not even have a neurologist and do not know how I am going to get one-at least that is any good. I have decided to return to my PCP-see him next week-even though he still was dismissing my symptoms the last time I saw him before I headed up to Mayo and I am still pissed off at him for that. Hopefully he will acknowledge all that went on and will try to get me in to see someone in this neuro practice. I can't very well go back to any of the neuro practices I have seen in the past that dismissed me. They'd probably tell me the same things/make the same ignorant assesment of me that they made before. Maybe I should and then surprise them with my records. I'm sorry this is so long. I still have a lot of anger and don't know how to get rid of it. I start to come to terms with some of what happened to me and then something happens like neurologists refusing to see me in their practice.
A lot of what you refer to makes sense, except now most of my bad vibrations happen whilst awake and upright, I have suffered from bad sleep, a bit like you say moving during dream sleep, or at least a full body vibration, and horrible nightmares, if I don't get enough sleep, my next night's sleep is always fraught, and I often wake up physically trembling. I don't sleep walk, but I definetly sleep shout and flail! However I wonder if the brain shakey feeling I'm getting is related to motion and balance. At the moment if I close my eyes whilst standing I feel that I'm moving. Like you say about being on a boat all day, that motion feeling, or like walking uphill on flat ground. But the experience of the bad brain shakey thing is like a strong sudden fizzy feeling in the head. I can suffer the vertigo like symptoms that come after it is the sudden fizzy, shocky thing that almost knocks me off my feet!
thanks
J
Like many other people, I should see a doctor but haven't, hoping that the problem would just go away.
Thanks
Thank you again for your thoughts. Believe me, I completely understand the frustration and fear that you feel regarding your symptoms and the experiences that you have had with doctor's dismissing your symptoms or having nothing practical to offer in terms of treatment.
To answer your questions...
I am diagnosed as having an autonomic dysfunction, although the origin is not clear and it has taken several years and exclusion of most other possible causes of my symptoms to arrive at it. Because I have an elevated ANA, rheumatoid factor, etc it is speculated to be autoimmue-mediated. All of my symptoms and medical problems began developing about a year after I had a "viral" illness (swollen glands and bad fatigue for about 2 months) from which I never really recovered. They have multiplied in number and intensity since then, so the best diagnosis I have is that something was set off when I had this "virus" and I now have neurological, immunological, and endocrine manifestations that debilitate me on a daily basis. Despite being 25 I have probably had more blood work, biopsies, scans, and scopes than ten 90 year olds combined! I have the abnormalities I mentioned before (elevated lipase 3-4 times upper limit of normal, low ferritin, low estrogen, mildly low thyroid, somewhat abnormal autonomic test results, both hypo and hyper glycemia, and all those symptoms I discussed in depth). I've never had a LP, but at least 6 MRIs of my brain and neck haven't shown anything structurally wrong with me. When I stopped sweating it was pretty much all over except my hands and feet. I haven't regained much sweating and can't tolerate the heat. My body is capable of sweating on the QSART, but I don't sweat in a thermoregulatory test. I don't know especially much about autonomic-related endocrine function, but I honestly don't think that any medical professionals know much about it. I am in the medical profession and have done searches of research and literature and there is not much information about there about what has happened to people like you and I. I just know that the endocrine axes are autonomically controlled and can therefore be affected by autonomic dysfunction. So, I am still in graduate school, although I am supposed to be starting clinical rotations in a month and don't think that I will be able to. I will likely need to take a medical leave from the program, but I am not sure how helpful that will be given that there doesn't seem to be much to do to relieve my symptoms and everything I have tried has made me worse. It would just crush me not to be able to graduate because I have wanted to work in medicine for as long as I can remember and I am very academically motivated.
I wish you the best of luck with finding a neurologist. I have seen at least 6, and I have finally found an academic medical center that understands autonomic dysfunction and has given me a diagnosis. Like I said, I understand your frustration and anger with the doctors. It's hard to treat and understand something as abstract as autonomic dysfunction, especially when there is no magic cure. Doctors want patients that they can write a prescription for, send out the door, and not hear from again for a year. The hardest thing to hear from a couple of doctors during my struggle for a diagnosis was the suggestion that I had an eating disorder! I thought - you've got to be kidding me!?! You think I am in any way doing something to myself to make my life a living nightmare like this?!? I don't think so. It has certainely been a hard road and I don't think it'll smooth out anytime soon, but I am praying that the acupuncture will have a positive affect. The lady seemed positive that it would to helpful. I can let you know how I respond to it if you'd like. Take Care!
TJ
Sorry I mis-typed his name, it's Bobb Hilton....
TJ
After you've undergone the acupuncture, do post back and let me know what the results are for you. Just one more thing-you can respond later if you want to-do you think there is any way you could have some kind of polyglandular failure (since you seem to have multiple endocrine/glands involved as well as the autonomic dysfunction? I have two cousins on my dad's side that were dxd with Addison's disease (their mom has it as well, so apparently it's hereditary). My one cousin has more than just his adrenal glands involved-he has problems with his thyroid, pituitary, etc., so I don't know if he has Addison's, polyglandular failure, or what. I know Addison's/polyglandular failure is rare, but it's a possibility. If you are in the medical field you probably know more about it than I. I do think it is considered autoimmune in nature, though. I look forward to hearing from you on this board in the future if you don't see this post. Good luck with the acupuncture.
The problem is though that I have a host of issues particularly with my head, neck, and shoulders that I think are related to my sleep problems and the Vertigo and I can't get one doctor that will consider this because they are only comfortable with one or two aspects of my issues. It's so frustrating. I know that I am not a doctor, but I think a person knows their own body and that is what mine is telling me. Now, if only I can find a doctor that will consider everything as a whole and will treat the problem, not mask the syptoms (symptoms). Another thing to consider is that almost everything that is wrong with me seems to be inherited through my mother's side of the family. My sister, mother, nephew, and grandmother all have so many of the same issues and still none of us have found much relief. What about you? Does it seem to run in your family?
Thank you for responding. I appreciate it.
As to heriditary problems, I have asthma so had my mum, my sister and 2 of my nephews, my Dad had vertigo most of his life, I don't know if there is a connection. I had an MRI brain scan yesterday to see if it will throw any light on these strange symptoms, I suppose I could be waiting weeks for the results. Regarding medication for vertigo, my dad was given a drug and he took it constantly for about two years, he was diagnosed with Parkinson's Disease 3 years ago, I googled the drug he was taking for vertigo and it was one of the ones that can cause drug induced parkinson's - he went off the pill and he is back to normal now, I can understand your fear of taking medication, this experience has certainly made me think twice!!
However, If I knew it was vertigo I was suffering from, I would feel a lot better about the symptoms and just get on with it, it is the blank looks from Doctors I cannot abide and the constant tests are a real pain in the butt!
Best
J
I will certainely try to post back on this forum once I have tried a few sessions of acupuncture to see whether or not they have a positive impact on my symptoms. In regards to Addison's and glandular failure, I had a ACTH stimulation test performed this past summer and that was normal. I actually do see an endocrinoligst every 6 months and we monitor all of my gland function and labs because my hypothalamus and pituitary are funcitoning questionably. Thank you for asking and suggesting it though. I have appreciated all of your comments - hang in there and don't give up! You only have to read some of the posts on the forum to find a small amount of comfort in the fact that there are other people out there who struggle through each day and live minute-to-minute at the mercy of unexplained symptoms! Best wishes and I hope you find a neurologist that will take you as a patient and be willing to work with you to improve your life or at at least monitor your symptoms.
I just wanted to share that I have the EXACT same thing, vibrating in my head, followed by intense vertigo. It's been going on for aboutr 7 weeks on and off, and I have also been mildly dizzy most days. It started with the vibrating sensation in my neck (only lasts a few seconds) but yesterday it happened more across my entire head.
I agree that the vertigo is not so bad, the vibrating part is VERY disconcerting.
I had an MRI and EEG, both normal.
One thing I read here that sticks out for me is pain in the neck and shoulders. I have pretty bad pain there from stress, etc. and am wondering of that is the cause (pinched nerves or something).
I have a follow up with neuro on Monday but am not hopeful for answers, judging by what I am reading here.
I have this vibration pretty mild and intermittent and never mentioned it to my neurologist, mostly cause mine seems pretty inconsequential & minor (even a bit funny at times, and makes for some awkward social moments) , though now I probably will, to add to the list of weird stuff I have had over the last few years. Sometimes I think my cell is vibrating on my leg & its not, or I spilled something on my leg or there's a hot spot--usually its my right thigh. I also have several other odd things that have come for a while & then gone in diff parts of my body, like burning hot sensations, prickling, tingling, aching, icy sensations, twitching, very weird cramping, pain breathing and swallowing, and even some odd occasional myoclonic jerks & electric shock sensations. I have also had lots of headaches, nausea, cold intolerance, dizziness, hyper reflexes, and occ one of my pupils dilates, and a couple times got misshapen. I used to be quite healthy.
I wish I could say what my problem was as it seems so many people have similar problems, but I don't know and I have had lots of good care. I have had lumbar punctures and a couple electrical tests and they are negative. I do have a brain mass near my brain stem, but its stable and probably not the cause per most drs., but maybe it does play a role say some, though its not growing as far as we can tell. I think its helpful to think of how little we know aout the human body, and I think it is good to try to keep a sense of proportion and beware that if you have MRI, or other tests, things will likely come but may not be something to worry about. There's probably lots of causes, and one I think makes sense is that it could be a virus or environmental exposure that occurred in the past.
I was initially told that I was suffering from Panic Disorder/Panic Attacks. since I at first was getting the typical attacks of the heart palpitations, clenching chest wall pain, lightheadedness, and freaking out that I was going to die or have a heart attack.
So my doctor decided to try putting me on Zoloft, in the SSRI class of anti-depressants since she thought for sure it would do me wonders and eventually get rid of and eliminate my symptoms. My GP promptly wrote me a script for Zoloft at 25 MG, and told me, "take this, you will be fine and it will do you wonders!"
So I left, of course stupididly believing every word she said. I went and filled the prescription, and the next day popped my first pill...
About a few hours into taking it, I had the WORST feeling in my life (well, it only got WORSE from there). I felt severely woozy and lightheaded, and had to sit down to balance and keep myself together. It felt like the entire room was spinning, and my head just felt BLAH all together, like I was getting a head illness or something. I was in a store that day, since I assumed everything with the med. would be fine, and was getting ready to check out when it just HIT me like a ton of bricks. Now, I have had lightheaded spells TONS of times in the past as well as Panic Attacks and Chest Pains, and it was NOTHING like those I had experienced before!!
After that ONE day of taking the pill, I deviated away from taking it again! My symptoms improved, and I no longer had any more of those light headed spells after that one day..
However, as I was STILL suffering from the severe heart palps, chest pains and anxiety/panic attacks, my mother convinced me to give the med. another try, since my "sis was on an SSRI for her GAD and it was working her WONDERS." Still skeptical about taking the med., but DESPERATE to get rid of my other symptoms, I again popped the med...
Now, the first day I was fine, and this was on a Friday. I was back in the apartment with my fiancee, and it was late one Saturday night, and I was just lying in bed waiting for my man to finish getting ready for bed so I could follow up as well. I then all of a sudden felt this ELECTRICAL SURGE seem to VIBRATE throughout my head/brain, along with a ten-fold pins-and-needles feeling that surged through my head. I then felt the electrical surge feeling continue to surge through me, even going up and down my spinal cord. I PANICKED, of course, not knowing WHAT was happening to me. I started seeing blotches, and I PANICKED that I was going to pass out, have a seizure or SOMETHING!! I ran around the apartment, the feeling still going on through my head. I then tried sitting on the bed to calm myself down and regain myself, and it seemed like it started to pass. Then, I felt ANOTHER attack, worse than the first, which truly caused me to have blotchy vision and just go into utter chaos.
My fiancee drove me to the hospital in case by the time we got there my symptoms worsened or progressed. Eventually, the off-and-on symptoms DID pass, after about 45 min. to an hour of pure hell and off-and on VIBRATION FEELINGS and ELECTRICAL FEELINGS surging through my brain.
We just went back to the apartment, and I went to bed that night.
The next morning, I woke up, and probably a mix between me having the attack that night and due to the fact I didn't get much sleep, I felt completely SLOW and BLAH the entire day. I could barely bring myself to speak, I dragged myself slowly across the room, and I just overall felt like a complete pile of ****!!
I called the doctor-on-call (since it was a weekend) and told him about my horrific experience. You know what he did?? He "Poo-Pooed" me away and told me "Oh, it's not the medicine, just you. It was probably just a bad Panic Attack." I was SO mad....he also told me to "continue on the med." >:(
I continued taking the med., and that following week, on a Wednesday, I had ANOTHER milder, but more PROLONGED attack that lasted off-and-on for about 2 HOURS!! :( :( It kept me up until like 1:30 a.m., so needless to say I slept in late the next day...
The problems FINALLY seemed to dissipate, for about 2 weeks. However, after those 2 weeks were up (and I was still on the med.), I AGAIN began getting the weird head attacks!! Most were not as severe as the first, but they were still attacks nonetheless. Now, I have had Panic Attacks, and know what those were like, and sure these caused me to have Panic Attacks also, but moreso since I didn't know WHAT THE HELL was going on!!! :(
I was then getting head-related zings/buzzings/electrical sensation attacks EVERY DAY, sometimes mild and bearable and other times not.
I eventually STOPPED the med. after having it in my system for a month, but my stupid GP (she is a good doctor, but not for things like this) told me to QUIT IT COLD TURKEY. She said I should not experience too much side effects, if any.
Well, needless to say it made my head attacks TEN FOLD!! Sometimes they were mild and bearable, like before. And there were days I went without attacks. But when the bad ones struck, they left me PARALYZED in certain limbs, my head felt like it was going to go into CONVULSIONS or something, and it was just like PURE HELL!! I was completely conscious during these attacks, so you can imagine the FEAR I was under during this time.
I had an attack that was SO BAD once: I was just sitting on my computer, and then I all of a sudden felt this WEIRD sensation in my brain, particularly on my RIGHT side, and it felt like my brain/head was going to go HAYWIRE!! It physically felt like I was about to have a stroke, seizure or SOMETHING, even though I never did!! Well, of course I PANICKED, and I called the ambulance in fear it was in fact a TIA, stroke, or seizure about to happen!! I walked downstairs from my apartment, and as I stood on the stairwell by the doors to my apartment complex, I could feel my WHOLE RIGHT LEG BUCKLE UP, GO NUMB, and I COULD NOT EVEN MOVE IT!!! I was PETRIFIED!! What the HELL was going on with me?!?! :( The ambulance came, and before they came I could feel the feeling return in my right leg, it went "erect" again and I was able to regain control of it. I had to BALANCE myself by holding onto the railing of the stairs while it happened. Yet I remember every speck and detail of it perfectly...
After about a month 1/2 or so, and after starting on a mult-vitamin since I thought maybe I had some vitamin deficiencies that were attributing to my problems, my problems not only began to dissipate, but the head zings almost vanished COMPLETELY!! I still get the dizziness/lightheadedness and my head will feel quooky/odd still at times during some of my Panic Attacks, yet NOTHING like I had to endure before!! And sure, I still get heart palps and anxiety, but NOTHING like the torment and torture I had to go through getting ON and then OFF the Zoloft!!!
I am now seeing a Psychiatrist, who prescribed me with Lorazepam and also prescribed me with Lexapro, even though I TOLD him about my reaction to Zoloft. He was STILL convinced, however, that it was just Zoloft and that another SSRI should do the trick. Well guess what happened???
I took it on a Saturday, and for most of the day I was fine (aside from feeling a little tired). I thought maybe I was HOME-FREE and found a med. that would work GREAT!! I took it at NOON along with the Lorazepam, which I take 2-3 times daily. After 6 HOURS of the med. being in my system (Lexapro), I got ANOTHER head-related attack of the electrical vibrations, ten-fold pins and needles feeling, and getting sweaty and clammy, then cold. I immediately called my doctor, and STOPPED taking the med from there on out.
I am still taking another med., Lorazepam, for the panic attacks, but I still get the head zings and vibrations occassionally still (perhaps as a reaction to having the Lexapro in my sys. for that one day???).
I mean, my doctors assumed it was part of my Panic Attacks, but how could it make my LIMBS GO NUMB like that and UNABLE TO MOVE, let alone those painful electrical surge feelings I used to always get.
Anyone else have any advice/ideas as to what we could all be??
MY Sister has been suffering with the SAME EXACT "vibrational" feelings and "buzzing" feelings in her entire body for over 2 years now. She's been (just like it seems all of you have) to FOUR Neurologists, probably just as many Ortho. Docs. and is getting NOWHERE! All her Neuro tests, MRI's, etc, etc, are NORMAL! She has (and tomorrow, I'll get her on here to more accurately describe this part) a definitive diagnosis (PARTIAL), a "kink" in her cervical spine that is so severe she is facing a possible surgery that will leave her with no head mobility. She is A YOUNG, BEAUTIFUL, ENERGETIC, "HEALTHY", THIN, ATHLETIC, HAPPY, FIRECRACKIN' 44 YEAR OLD MOTHER WITH THREE BEAUTIFUL " BABIES" to raise: 14, 9, 3. .she can NOT leave herself in the condition this surgery is definitely going to leave her in . .and they STILL CAN'T TELL HER IF THAT'S WHY SHE'S "BUZZING". . OH my God, I can't believe these countless posts all stating such similar symptoms and I am sick for her (and for ALL of you) that NOONE is seemingly getting anywhere? Oh yes, ALSO, no MS, No Lyme Disease. . . etc, etc, then WHAT???
Is anyone from the CT area? Do we need to form some kind of "grass roots" movement to awaken the Medical Community to WHATEVER is causing this. She is NOT depressed, she is NOT anxious and trust me, if she thought that was what it was. . she would have NO problem saying so . .she is NONE of those and won't "cop" to any disorder that she doesn't have to in order to get some Doctor's attention.
It would be my GREATEST JOY in life to give her this GIFT, to try to help her find an answer. . I'll take her ANYWHERE? Is the Cleveland Clinic "the" place for "hard to diagnose" disorders? Does ayone know? Oh God, My heart bleeds for her all day, every day (and now for all of you). .
THERE HAS GOT TO BE SOMEONE WHO CAN HELP US????????
PLEAAAAAAAAAAAAAAAAAASE
BARB
I have had very "enlightening" moments, but it is NOT a result of this physical torture that I must endure. That only occurs when I am in deep meditation or thought, then the Lord makes things clear to me as to why I am suffering through this torment day in and day out. He helps to put my mind at ease, but he CERTAINLY isn't causing the symptoms I am experiencing.
Through my meditation, I have learned that in all reality I was just through the years doing it to myself. I always struggled to work hard, and at the same time I was a bad procrastinator and stayed up late at nights, and over time my body and mind could only handle SO much stress and tortue, so it is more of a rebound effect. God has shown this to me, but he certainly wouldn't cause such a horrific experience or infliction upon me. That is just blasphemy and ignorance, my friend.
What I have DOES have a diagnosis: I have Panic Disorder, or Anxiety with Panic Attacks. My chemical levels in the brain are out of wack, and the brain is unable to compensate and unable to control those particular chemicals which focus on the autonomic nervous system and regulating anxiety and panic. In normal situations, when you are at ease your anxiety and chemical levels in your brain SHOULD be low, yet in a person suffering from anxiety and panic problems, the levels are at a constant flux or constant high (depending on the situation). It thus causes the body to physically and mentally react when the levels get "high" and the brain is unable to control the functioning of these imbalanced chemicals. So, panic hits, as well as all the physical symptoms to boot.
Instead, I'd recommend taking a look at this site. It lists EVERY possible symptom for anxiety and panic attacks, and most I myself have experienced AND more which to me should be listed. Yet I have had EVERY test possible, and all came back fine.
I want you all to check this out, especially if you all too had every test in the book, bloodwork and all to boot, and let me know if any of this sounds like you:
www.anxietycentre.com
Please, all of you check it out.
Also, the cause of my mind jolts/vibrations proved to be for me a reaction to the Serotonin in the SSRI's that I was given for my anxiety/panic disorder. Anti-Depressants can do a LOT to the mind, and I wish doctors wouldn't continue to prescribe it as a cure-all.
However, anxiety and panic attacks too can cause tingling, numbness, as well as all sorts of sensations. After I stopped the Zoloft, it just became part of my Panic Attacks, because your mind becomes TRAINED to reacting that way when a Panic Attack hits!!! The mind can do a LOT more than you think.
PLEASE check out that site all. I am hoping for some of you it will do you wonders and provide some relief.
~Crystal
I have alot of weird symptoms that have been diagnosed as generalized anxiety disorder(GAD). Internal shaking, neck pain, lightheaded, muscle aches etc and I honestly dont' feel anxious other then I get really scared of my symptoms! It is a hard cycle to break... The more you freak out about the symptoms the worse they get! Anxiety is horrible and can do many things to you.
I really hope that you all feel better soon!
I am 29 years old, and have been having major medical problems since I was about 21. I was diagnosed with Rheumatoid Arthritis for seven years until I went to another rheumatologist and he said it was severe fibromyalgia. I also had every symptom of MS right after having both of my children. Each time I had MRI's done and nothing but a couple of dots (he said maybe from migraines) were showing up on the films. Then about a month later the symptoms would slowly start to go away. My blood tests have shown a positive ANA, elevated lupus titer, elevated sed rate, and high rheumatoid factor since I was 21. I am just really finding it hard to believe that this is just fibromyalgia. I know there have to be more people out there as frustrated as me!
FYI: My mother has fibromyalgia and what they think is CREST Schleroderma, her brother has Chiari malformation, and there is a lot of RA, lupus, etc. in her side of the family.
The vibrating, the nausea, and a long, long list of other symptoms were signs that my hypothyroidism was asserting its presence after years of causing weird symptoms (many of them seeming "neurological") in a very sneaky way. Note that I said hypo (under-active thyroid gland) not hyper. It was easy for several highly competent physicians to overlook the possibility of a thyroid problem because not being endocrinologists, they did not realize the extent to which the boundaries of "normal" for a thyroid stimulating hormone (or TSH) levels have been revised. The highest my TSH level has been is 4.11, but I was impressively unwell at that level. They also did not realize that hypothyroidism can cause paradoxical (or contradictory) symptoms.
Any of you who are vibrating or who are having odd symptoms with a neurological overtone: If the source has not been clearly identified, then you might want to consider a one-time visit to an endocrinologist.
Vibrating hand, though...it felt super wierd, and it felt weak too...
I also have had these wierd 5-15 second long feeling like blood rushing to my head...it is NOT normal....right?
It freaked me out, because that hand had just been X-Rayed...but this might be worse...
I have come to some conclusions and have made major changes in my life and thank the Lord God in heaven, I am better.
I believe that Lyme plays a part. Please have this checked by a real Lyme literate doc. If it comes up negative, check it again more thoroughly. I believe that other viruses and bacteria are involved as well.
My diet was horrible. I took out gluten which really helped and now I am flour free. I tried the BED on body ecology and that is helping alot. Go to www.bodyecology.com. I can not eat sugar.
Magnesium citrate helps my bowels to move and helps me sleep. It helps my muscles as well. I take Magnesium glycinate at times as well.
I eat foods rich in potassium like spinach, swiss chard, brussel sprouts, broccoli, umpkin seeds and sunflower seeds (both raw) and so on. I eat them daily and count my potassium content daily.
I do trigger point work on myself as outlined in a book by Clair Davies. My neck causes dizziness and off balance feelings.
Sleep is a critical factor. The less I get the worse I am. You have to work on sleeping. Magnesium helps me alot. There is a magnesium called Natural Calm that might help. I read the Bible before sleeping and I get on my knees and pray earnestly for the Lords help.
I do take probiotics and make my own kefir. I have had a diagnosis of Crohn's in the past but the symptoms of it are gone now. I have also been diagnosed with fibromyalgia. It is better. The most disturbing symptoms that I have had and still do occasionally are the seizure like things at night just when I am falling asleep and I contribute those to my neck. Also, the dizzy type feelings and thinking I might lose consciousness. I have learned to pray to God in heaven in the name of His son, Jesus for help. I know that whatever He has intended to happen is going to happen and I need to calm down and trust Him. I read my Bible daily and intend to obey. I am not perfect. I am doing all I know to do and praying for God to continue to bless it. I sure hope this helps someone.
michele
PS: One thing that I've done recently is to stop ingesting Aspartame. My hairdresser told me that her Restless Leg Syndrome went away when she stopped. Her sister's too. I drink diet pop, flavored water and sweetener in my coffee. All have Aspartame. So I've stopped cold turkey. I figure it can't hurt. I'm also going to look into the chance that this is thyroid related. I feel my neck kind of hurting and burning by my adam's apple. But my doctor said my blood test came back normal. Any suggestions on whether I should pursue the thyroid angle further since the blood test was normal? But I feel burning right where my thyroid is.
Good luck to everyone! We're not alone! Big hug!
I would urge you guys also to get your TSH, FRee T3 and Free T4 levels tested. Also dont go by the usual normal levels ..the standards have been revised. Do some google and you can find a lot of info on some other boards.
I haven't read all the postings but Jane's caught my attention. I have had this vibration like feeling since I was 16 years old. I am now 45. It starts when I am almost falling asleep, but usually when I'm taking a nap, not going to bed for the night. I would describe the feeling as having a jackhammer in my body with a loud buzzing sound in my head. I have found that I can will myself out of this state by forcing my eyes open. However, over the years I have let the feeling take over and have found it progresses to a feeling of slipping out of my body and travelling at tremendous speed. Sometimes I travel up, sideways, straight out through my feet....etc. I rarely get this sensation anymore, but I have gone a different direction with my research and have actually entertained the idea that I am leaving my body! There are numerous books on this "feeling" a few by Robert A. Monroe "Journeys Out of The Body". Let me say that this could be the case for some of you, especially if you can will yourself out of the feeling. I hope you won't think I'm crazy, but after being alone with this for so many years, and finally finding a book that describes it to a "T", it seems like a very interesting and wonderful explanation.
THank you soooooooooo much
Tina
For more information you can check out the signs here:
http://www.domin8rex.com/serpent/spirit/k.htm
http://www.kundalini-teacher.com/awakening/serpent.html
http://www.mudrashram.com/kundaliniemergencies.html
http://kundalini.se/eng/symptoms.html
http://www.visionandpsychosis.net/Schizophrenia_Cause.htm
http://www.kundalini-teacher.com/awakening/shamn.html
http://www.healingtaobritain.com/p67magazinequestforspiritualorgasm.htm
Yoga, meditation, stress or drugs can trigger the raise of kundalini, as i found out after I researched.
THis vibrations i can feel in the night and I'm trying to make my sleep as before as I used to have a perfect sleep pattern which is now ruined, also the dreams are unusual, and there are some ESP dreams too.
IF you have a better answer I'm open.
There is no pain or weakness associated with this new little quirk. I tried to get my husband to put his hand on my foot to see if he could detect the vibration - but I could tell he was only humoring me and thought I was being "eccentric"....I'm southern and that is a euphemism for "crazy".
I haven't been to a doctor referencing this problem, as I don't go to doctors unless strapped to a stretcher.
I have no health problems, and take no drugs...I hate to even take an aspirin. I do smoke and drink coffee (lots).
I did have a problem about 6 months ago where my vision was blurred and I was dizzy – so I did go to a doctor who performed a battery of tests up to and including a CAT scan. He pronounced me “remarkable healthy”for a woman in her mid 50’s, and the problem has not recurred. I also did go in for a routine eye exam and she found a “nevus” on my left eye. She wants me to drive to another town to consult a specialist, but I don’t see what the rush is as she also told me 99% of these were not a problem, and the usual course of action was to monitor it for a year and see what it looked like them.
I don’t see what any of this would have to do with my left foot. I suppose my next step is to contact SETI and let them hook a satellite up to the thing and see if any cosmic rock and roll comes in. Seriously – I’m at a loss. Has anyone else out there experienced this sort of problem?
I recently started going to a licensed massage therapist that is treating me with Cranial Sacral Massage. A very different and wonderful technique that helps my cronic fatigue, groggy brain, vision and vibrating. Although it seems to only offer temporary relief at this point, she feels she can cure these symptoms given enough time. It has to do with facilitating the flow of spinal fluid throughout the body. Look it up and definately try it from a qualified therapist. I had an MRI of my brain and it was "normal". I am seeing a neurologist in a couple of weeks, but after reading these posts, I am not expecting any break through answers. My best to you all. I think I'll buzz off now. ~
After reading all these postings, I will a doctor appointment. Thanks!
I am glad you got my explanation, I wish the doctors would. They just look at me and nod not so sympathetically. Anyway what you say about your period cycle is very interesting so you have also given me cause for hope. I was beginning to wonder if just before my period I was getting these head thingys. In the last few years I have got a migraine the day before my period, like clockwork, it tells me what to expect. But I wonder if this feeling is hormonal, or related to the migraine and the blood vessels in the head? Very interesting indeed and something I will talk to my Doc about. I will receive results of an MRI Brain scan tomorrow, don't expect it to shed any light because I have been waiting for these results for two months and my GP had to chase them up. But whilst talking to my GP she said she didn't think it sounded like Vertigo, because I got some numbness in my mouth after a really bad head shake. However I don't know if that was panic or not. Not to be nosey but I wondered what age you are, because if these are hormonal episodes would it mean we are premenopause, I find this hard to believe as I am only 38, ( Okay only is too strong a word) but you know what I mean, I am not expecting menopause for another decade yet, my Mum was 51 when she started.
Thanks
J
I see a rheumatologist on a regular basis for MCTD (mixed connective tissue disease) but this is a first and I doubt it has anything to do with the immune problem I have, but I will definitely be bringing it up to him in August.
It's driving my crazy, like my foot is purring! Once in a while I feel it in my calf or thigh but its origin is in the ball of the foot.
Hope you find a resolution - if so, please let us know. If I find out anything I'll post back here.
Blessings,
usamom
Anyone have any advice?
I'm a 47 yo male in perfect health, and it is not likely that I could have diabetes or stoke, or anything that could cause neuropathy. I saw a neurologist and he did the basic workup, including the vibration sensation test with the tuning fork. It is so ironic that the sensation of the tuning fork describes exactly the feeling I am getting in my left foot!
Apparently there is a growing chorus of people out there that are getting these sensations, but doctors still have no idea what causes this. I have decided to forgo all the EXPENSIVE tests, as my research has indicated that most people that get MRIs to attempt to diagnose this ailment come back negative almost 100% of the time.
Since this is not debilitating, I will play the fatalist for now and live my life as though normal until I can get some definitive answers.
This is so strange!!
It is interesting that doctors seem to be hearing more about this recently.
Would any of you be interested in making a more concerted effort to organize ourselves, form a real group, maybe on yahoogroups, for example, (a place where we could post details about ourselves, which might actually lead to some conclusions, not just voice our symptoms).
That way we could find out, for example if this syndrome is concentrated in certain parts of the country, many different countries, etc. Mabye actually form a methodology for more scientifically tracking our lifestyles, and maybe figure out by ourselves, or in conjunction with some doctors, exactly what is going on here!
I belong to a (please don't roll your eyes) Feline Diabetes website and the work that these people have done is nothing short of miraculous. They have organized their data, have helpful documents posted to form a type of reference library, etc. If you would like to take a look, the website is www.felinediabetes.com .
If anyone out there is more computer literate than I and would like to undertake forming a group, www.yahoogroups.com is a great place to form a group.
I am eager to hear from you!
karmenpost @ mchsi.com (spaces left intentionaly, please delete spaces if you would like to email me directly)
~Karmen Post