I have had the same problem for 6 years.. I have been to no less than 10 doctors. every night it starts ...I make crazy involuntary sounds anywhere from a normal voice to repetitive screaming. at the same time I jerk up or contract...it is totally involuntary...all this happens over and over just as I would be ready to doze off. hate to go to bed...i many times just find reasons not to go to bed. when i finally do sleep then i can't get up and have no sense of responsibility...it is so horrible every night it is hard to explain. I use a cpap and love it...I'll - sleep studies narcolepsy diagnosed, bi polar from another, restless leg nope wrong again...neurologists, orthopedics, psychiatrists, sleeping disorders and more doctors -one thing though provigil has been a savoir during the day, lacminctal, effexor currently along with other pills. i think i have had them all. believe it or not once up i am doing very well comparitively prior to provigil...doing wll at work and family...truly heaven and hell every day...every night and morning is 'Welcome to my Nightmare" 57 years old..guess it is here to stay.
Hi, how are you? Probably the stress you are under going itself could cause the symptoms worse. Does these movements, which are seen prior to sleep will continue even after you go to sleep. Is there any triggering factor or a relieving factor? Do any of your other family members also suffer from similar problem? You could probably be having Rhythmic movements like head banging or sometimes limbs during sleep. As you said these movements tend to occur during the stage just prior to falling asleep and typically increase along with stress levels, which is common among very young children, and thought to be born out of a comforting habit to go to sleep. Try relaxations techniques, regular exercises and physical therapy. A healthy bed routine would be beneficial. Usually it outgrows with time and improvement in overall health, but if it presents to be a danger or if the activity is interfering in daily activities for a long time as in your case, it is better to consult a Neurophysician soon for evaluation and a second opinion from sleep specialist to rule out any other possibilities. Take care and keep updating us of your doctor advise.
Hi, thanks for your reply. You can consult a neurophysician for an evaluation and also get a repeat sleep study done. As you are suffering from a long time, the disturbed sleep and the difficulties you going through does cause a tremendous stress to body and mind which can be a primary trigger. Too many drugs can also sometimes affect adversely. You can also have a psychological counselling as you can be then more assured. Take care and share your thoughts.
Been there done that,,,,,2 neurologists, brain scan, cat scan, mri's from head to toe, top psychiatrists, 2 sleep studies , plus 2 day time studies......when this started for the first time was.,immediately after i had pneumonia but they gave me a spinal to check for meningitis...no doctors seem to think that is related but it is the only thing that happened in my life different than normal. the pressure i first get just before it starts is right at the tail bone where the spinal tap occurred. I have been to Cleveland clinic, Emory and to other medical centers...it doesn't change...everynight the same..
Hi rrllzz, thanks for your response and hope you are doing good. I feel post convalescence stress could have been the cause or a trigger factor as you might have had a tough time getting treatment for pneumonia. Were there any residual symptoms, which might have been neglected? Even post spinal tap complications if any should be ruled out. Also it is advisable to consult a new neurologist for an evaluation. Do try to relax and record your blood pressure readings. Stress does worsen the condition further so try to overcome it. Take care and post your views.
My blood pressure is excellent even though over weight. What is post spinal tap complications?? Please tell me what things can go wrong with a spinal tap. I have been to 2 neurologists not going to do that again. The doctor, that changed my life or I should say saved my life during the daytime hours when he started me on provigil, is suggesting I try Xyrem. He gave me some literature on it and wants me to call him next week. You are right about taking a long time to diagnosis the pneumonia. I went to the em emergency room three times; early Saturday morning, again Saturday evening then on Sunday evening all with 103 to 104 fever. I called my physician on Sunday prior to going and he told the hospital they had to admit me. It was during that evening I believe when they did the spinal. Remember this was probably in late 2002 but my night time problems started right after coming back from the hospital and has been slowly but progressively getting worse ever sense.
Hi thanks for your reply, how are you doing? It is better to seek doctor’s advice before changing any change in medication under doctor supervision. You need to see the drug benefits and then the side effects there on. Xyrem has shown good results in few individuals so can try it. Any surgical procedure might have some post procedure limitations or complications, which is rarely seen, needs regular follow up. Talk to your physician in detail on your next visit. Sleep can be disturbed in many ways, stress is common trigger and you have to overcome it. It is also better to consult a neurophysician for a second opinion. Take care and post your comments.
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