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  • Moebius Syndrome

    Moebius Syndrome

    Moebius syndrome is a rare condition that affects the 6th and 7th cranial nerves, resulting in paralysis of the muscles that control face and eye movements. Read more →

  • Spina Bifida

    Spina Bifida

    Spina Bifida is a term used to describe a series of birth defects that affect the central nervous system and the spine. Read more →

    How does someone get the right referral? My son wants to die, he has planned to kill us both in the past, he self harms... He's 20 and feels everyone has given up on him. Only reason he's still alive is because I've convinced him every form of suicide he can think of is more likely to result in paralysis or being hooked up to a machine and he won't be able to try again, he'll be trapped. I'm terrified for him and he's in mental/emotional turmoil and desolation but the GP nor the hospital will refer him for psych diagnosis. I really think he is bi polar or something. :(





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    Check out this website, hopfully it might help shed some light on The Mental Health act which is a law that allows relatives and professionals to make decisions about an individuals treatment if they are not mentally capable of doing so. It sounds as if your son not only poses a danger to himeself but to others, which is good grounds for admittance to a psychiatric ward - which sounds scary but it is a step towards recovery. Mental illness is a tricky one and it's best to exhaust all avenues of information available to you so you can make an informed decision. Hope this information finds you well.

    Hi, I saw this item on the show last night and this reminds me of my own problem with Bells Palsy for more than 4 years where I have semi paralysis of my face and suffer the same effects of having no proper smile, lack of suction, etc. Neither my GP or I had found a treatment, would the procedure on the show provide a solution ? Regs Eddie





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    I have a problem where when I’m coming out of a dream, I have sudden awareness that I am actually still asleep and panic. I desperately struggle to wake up but my body won’t respond. Eventually when I manage to wake up I am absolutely terrified. This happens a lot. Is this a form of sleep paralysis?Either way, it’s ruining my sleep because I’m often too scared to go to sleep. What's happening to me?





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    Hi,I get severe pain in my left thumb after a play fjght with my son more than a year ago, if I tap or knock it of something, the pain is very severe and causes paralysis to the whole hand for a few minutes and the pain brings me to my knees. I also get shooting pain in the hand which hasstarted to disturb my sleep. Xrays came back fine and the doctor has put me on painkillers as he seems unsure what to do next.





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    Hi, im a 20 year old female and have had mobility problems since the age of 9. I've been told i have growing pains, hypermobility syndrome, artheritis, multiple sclerosis but all tests and scans have come back clear. My syptoms seem to be getting worse and more frequent. Over the past year my symptoms seem to include paralysis in my back and in my legs. I also have problems with my wrists, hips, shoulders and ankles. I have not yet met a doctor or specialist who knows what is wrong and have today been told that there is nothing else anyone can do. I've had no injuries or accidents that could have caused any of the pains. Does anyone have any ideas what it could be?





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    Please see Professor Rodney Grahame, the world specialist on Ehlers-Danlos (hypermobility) for a definitive diagnosis (London). There is an international Fascia Congress site which has useful information for the various forms of what is now called hypermobility but has various manifestations. You need to keep exercising (moderately) and therefore need to see an exercise therapist or personal trainer (not a physio)as strong muscles will continue to support weak joints. Good luck.

    I'm 33 and I have had night terrors/sleep paralysis since I was 5. I've had traumatic events spread across my lifetime varying from molestation to rape to many cases of domestic violence. In times of stress my night terrors happen at any time of the night and multiple times a night, up to as many as 20 times. Most of the time, when I wake up from one, I reorient myself to my surroundings, fall back asleep, and within seconds they happen again. The night terrors include being held down, fondled, whispered to, poked and tickled by dark figures, always men. Sometimes it feels like the bed is vibrating and my head is "swooshing" and other times it seems like I'm flipping in mid-air or there is a loud ringing in my ears. Many times I open my eyes and "see" objects floating or feel that an object in the room is causing my night terror. I try to get out of the "dream" because once I know what is happening I attempt to thrash around and roll off the bed, hoping to wake myself up. It feels like I'm literally achieving just that but I finally wake up on the bed gripping the sheets or grabbing at the air. The past year or more I have been free of the night terrors. I attribute this to finding a partner whom I truly trust and feel greatly loved by and safe with. My partner has seen me have the night terrors at the beginning of living together but they gradually went away. Unfortunately, few months ago I was in a car accident with my mom. We both sustained serious injuries, hers are worse than mine but now I stay at her house with my partner to help her with household duties as my mom's back is severely broken. My night terrors are back. This time there are now women whispering and screaming in the distance. (Maybe because my mom cries out in pain several times a day?) My partner over the years learned to wake me as soon as I begin breathing hard/fast in my sleep as this is the only signal I can give that I am having sleep paralysis. After my partner wakes me I end up turning on the lights, sometimes snacking on something, and doing something to distract myself. This can take hours since I'm incredibly susceptible to instant recurrent night terrors. In fact, I just woke up from a 30 minute battle (with the screaming women/vibrating bed). I woke up and searched adult night terrors then found this website. As I read some of the other stories above I almost had to skip parts because I worried they would trigger me since they were frighteningly similar to my problems. I do not wish to take medicine, as holistic approaches to many things have been successful for me. I feel meditation/relaxation techniques in the daytime will help clear my mind since I have not done any meditation since the accident. I will say, I once overcame a severe night terror. I was being held down by dark figures and I refused to be "taken advantage of." So I tried to stand up (in the dream) but had great difficulty. However, I was determined and stood straight up from a lying position with no assistance from my hands or bending of my knees. It was incredibly empowering. I still had night terrors after that but they happened less. This time around, I have been trying to overcome the night terrors but it seems I've lost my touch and end up "giving in" to the fight. I don't really give up but I wake up terrified. That being said: Has anyone else been successful with overcoming night terrors with sheer willpower and without medications? It's a tiresome fight and I need some reassurance.





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    Thanks for posting the above I was sexual abused from 4-15 as far back as I can rember I have been having them since 15 but got control of It for 2 years watched the programme It hit a nerve but I can feel the effects of me hitting myself off the wall feeling trapped.

    I was involved in a motorcycle accident back in June, 1972 when I was 14 years of age, which compressed my spine at 7th and 8th thoracic vertebrae, leaving me paraplegic requiring a wheelchair for mobility, with no feeling below my ribs. For years, until 2008, I used a condom catheter since I lost voluntary control over my bladder and urination, but due to more sustained leakage because of slippage, I now have a supra-pub catheter inserted into my bladder, bypassing my penis. I have learned to deal with being paralyzed, which includes lack of feeling and usage of my lower body, that is all but sexual dysfunction. I miss the feeling provided by sexual activity tremendously! I haven't had an orgasm since before the accident. I still have full erections, both due to manual stimulation as well as spontaneously; however, when my penis is in relaxed state, it withdraws until it...disappears! It recedes and drops out of sight. It becomes so embarrassing that I can't find the courage to talk to my doctor about the issue! The whole reproductive paralysis issue has been so embarrassing, such as penal withdrawal during foreplay, that I have not attempted intercourse. Yes, you heard me right, I have never had the full sexual act. Am I the only one to have such problems? Is my life going to continue to be sexless?





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    i'm no expert in the medical sense about your penis but i wouldn't worry about living your life sexless. if you find the right woman she will understand and help you through it. you just need to remember if any woman doesn't stick around because of it then she is not worth being with. get the courage to talk to your doctor about the disappearing penis but i would think its not a big deal as my ex partner had the same thing happening from time to time. hope things get better for you

    Hi Ms After reading your comment I can only say that I do understand how you feel as I got facial paralysis on my right side since I was 2 years old & now I'm in my forties as well. Yes, I went through many 'bad times' while growing up & I must say that even nowadays I had met some people who were not nice towards me due to my facial paralysis. However I try not to give those people any space in my memories as that would be giving them importance in my life which they do not deserve. If I get to know nice people I let them know at some stage about my paralysis so they know why one side of my face moves in a 'different' way. I also don't like my pics due to my paralysis but when I am taken pics I ask to be taken many because I know at least one will get my approval & that's the one I keep. I notice that when I'm tired my face muscles are like hanging the most so I do try to be rested when I know that pics might be taken. I'm married & am also lucky to have found someone who is more interested about my intelligence than about my looks. However my husband always says that he doesn't mind my paralysis. Finally I can say that at my forties I'm not interested in people who are so nasty & short minded to make someone's life a misery just because of a facial paralysis. Hope my comment somehow helps you.

    I am 28 and have had exactly the 'night terrors' described above and in the programme (although I didn't think they were called this - I assumed they were a type of Sleep Paralysis). As a child I suffered from the same thing, but only very rarely, if I was worried about something, and I only called out if I was particularly freaked out. My mother sleepwalks, my brother has sleep paralysis and my dad has insomnia- so I'm not sure if it's inherited? It's only after sleeping with my partner for the last 7 years that I have become aware of the extent of mine, rarely a week goes by without at least one occurrence. I will often sit up and stare at something looking terrified, my partner has to 'talk me down'. Sometimes I will wake him up and tell him what I can see- men in the room, dogs (I am not AT ALL scared of them when I'm awake), bats, mice, children. Sometimes I will scream or gasp. Last night I jumped out of bed because I 'saw' a man facing me up close with a knife. I am worried because it is getting rarer that I can remember what I 'saw', I only know because he tells me. Also, it alarms me because I am hoping to get pregnant soon and don't want to somehow induce labour when I wake up so suddenly and so frightened. Also heart attacks run in my family!!! If anyone has any advice for Amy- any for me would also be appreciated.





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    My terrors are different. I've read up about it I have Sleep Paralysis which means my brain wakes up before I do its terrifying. I can't move breath or open my eyes but I can hear everythin that's going on does anyone know of anything I could do to get rid of this??:(





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    Hello, I think you are describing sleep paralysis, a different form of parasomnia which occurs during a different part of the sleep cycle (I'm not sure on much more than that though).

    I suffered bizarre nightmares and night terrors as a child. Many times my parents would come in to my bedroom with me screaming and crying, then have no memory of it in the morning. Then during my early-twenties I experienced them again but more in the form of sleep paralysis without really any fear attached to it, then again in my late twenties, again sleep paralysis but major fear and dark shadowy presence. Both these episodes in my twenties were attached to the places where I was living. In other words, they both began and ended when I moved in/out of these homes. Now I am close to 40, and having night terrors every night. Different feeling than before, but similar in that right after I fall asleep, I suddenly think I am still awake, but am really asleep and dreaming. I then feel like I am almost drugged, with a loud ringing in my ears which grows louder, as it feels like I am slipping in what I can only explain what feels like death. It's what I would imagine a drug overdose feels like. Except in these dreams I fight to stay awake, or really fight to wake up because at times I realize I'm dreaming. I usually then start trying to struggle to scream and usually that's when I am yelling, and my wife has to shake me to wake me up. It is driving me nuts. I am losing lots of sleep over it.





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    I also have these exact same experiences in my sleep I am a 31 year old male and suffered from night terrors as a child which i suffered from all the way through my school life. they became less frequent as the years went on but i still suffer from them still. I have even hit the wall next to my bed in my sleep leaving knuckle marks which has woken me out of this dream state leaving my feeling exhausted in the morning. 3 years ago I settled into a relationship and have been living with my partner for 1 and a half years, at the start of the relationship my partner told me i had thrown her across the bed in my sleep and since then i have lashed out occasionally which is a big concern to me as of late they seem to be getting more and more frequent.

    i suffer from sleep paralysis, as long as i can remember, i think its caused by being to warm, over the years it has got worse, i have the same terror the pinning down of the chest, and the black figure in my room, the closest he has got to me was geting into bed with me and breathing over my face while im pinned down, its ever so frightning, but im wide awake! help?!





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    Try not sleeping on ur back!! I get this alot too it's when body is over tired and when u have finally got to sleep and you are layer on your back this what happens!! It's vile I hate it I hear myself screaming my name!! So remember have right amount of sleep and don't sleep on ur back!!

    Hi I just read ur story bout ur acoustic neuroma. I had surgery to remove a tumour 2 years ago and have been left deaf in my right ear and right side facial paralysis! I see from ur story u had a nerve graft cud u tell me more about this as the last time I seen my consultant they said there was nothin they can do. Many thanks barbara

    Hello, i'm 2o. Recently i have been having terrible panick attacks, when i awake. It feels like someone is pinning me down and strangling me, almost. It only happens when i awake from sleep. It doesn't happen all the time, but regular enough. I searched it and may be sleep paralysis, but i don't know............ help





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    I am 26 years old and suffered temporary lower body paralysis after a spinal cord infection (10 yrs ago). This has left my doubly incontinent. It affect every single aspect of my day to day life. I believe that once the nerves have been damaged there is very little that can be done. Is there anything possible that could be done? I have kept this secret for 10 years and it makes me very very depressed.





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    Do you recall any particular feelings prior to going out? During sex I'd say was more likely to be cataplexy? There's no set way narcolepsy works unfortunately & with myself, the sleep problems began last, after I'd had the other symptoms for some time especially sleep paralysis, which I'd been getting for a good few years, it'd be worth asking to be refered to a sleep clinic to ave the relevant tests done

    There are doctors that specialize in helping people with facial paralysis, due to trauma or a palsy, appear more symetrical. Look up Dr BABAK AZIZZADEH. Check out his website. There is help and hope out there. I have had Bell's palsy 4 times in my life time. Never recovered fully from the first one when I was 23. I'm 48 and currently sufferring through another episode.

    I'm not sure if I'm correct but it could be the way you sleep. I fall into sleep paralysis sometimes, I'm not sure if you know what that is but it's when you are dreaming while being awake kind of like hilucinating and this happens when you sleep on your back so maybe if you change the position you sleep in to a more comfortable relaxing one it will slim your episodes of night terrors.

    I would assume that because of your semi-paralysis you had to go through some rehabilitation. Sexual evaluation should have been included in the rehabilitation. If not, this is what needs to be done. In order to do a comprehensive sexual evaluation, several disciplines would need to be involved: physical therapists, social worker, neurologist, sex therapist, etc.

    i agree with everyone sleep disorder is related to trauma from childhood i used to have night terrors n it put me through a lot of trauma me bng in a country without medical privilages like yall ppl i had to live wth it untill now m 29 years old n still hv touble sleeping i dont sleepwalk but smtyms i suffer from sleep paralysis, but ol th tym i awake simultanoiusly every 5 minutes i shut my eyes...if there is any1 out there with advice please i will be mo thn willing to take it





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    I've never randomly fallen asleep but I do fall asleep within minutes of lying down. I turned 19 last month and since I was 14 I've experienced sleep paralysis. I've been having it alot, and I think I experience OBEs and I have flew, it's really lucid and I'm getting scared that it could be the start of narcolepsy. It's quite alot, and my sleep pattern is regular. I can't speak when it happens and my mums said she's heard me making a crackling noise in my throat, which happens when I try to scream. Should I ignore this or tell someone?





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    Hi.. I have been researching my own condition and Narcolepsy was one of the issues I considered too. Do you have muscle weakness (Cataplexic drops)as well? That is a real good indicator as Cataplexy is often diagnosed as a symptom of Narcolepsy. The thing to do is get a referral to a Neurologist who will order particular tests...which will eliminate other more serious conditions and make an accurate diagnosis first time. It may be that you go to a sleep clinic too so that sleep patterns and REM can be monitored. Narcolepsy can be treated/managed....Best of luck

    Hi before I was first diagnosed with narcolepsy I had exactly the same experiences.I couldn't believe that it was not real. I could feel the wind rushing around my body as I what I thought was actually flying.. Also the same paralysis occurred . Even though I was trying so hard to speak or even move only my eyes were working. I am not a doctor but you MUST go and see your gp and tell him/her you think you may have narcolepsy. The tests are painless so there is nothing to be scared of. Despite what the site says about causes of Narcolepsy they are wrong and any suggestion that this is genetic or from life changing events is totally false. Narcolepsy is an anti-immune illness. Basically the body attacks the cells that control the sleep/wake part of the brain. I have suffered from Narcolepsy for 25 years and have researched my illness like most of us have to because info is hard to find in the UK. Also those suffering from cataplexy (muscle drop/weakness) I take Xyrem its ghb or date rape drug. Controlled substance. My cataplexy has improved 95%. It is very expensive and I at the time of being prescribed (3 years ago) was one of only 60 people in the country on this drug. I hope this helps you. Good luck

    This is very much what I get too. I suffer from hallucinations and sleep paralysis and have done since I was tiny. I have noticed that if I lie on my back this is when I have the worst and most frightening hallucinations. Last night I saw a woman and a man coming towards me on either side of me and it terrified me. I screamed so much that I have a sore throat today. I had to sleep with the light on. It is nearly always people that I see and particularly faces but never anyone recognisable. Sometimes they look at me in a curious way but other times they are menacing. I am beginning to wonder if they are actually real as my hair was cut in my sleep the other day and once when I was little my parents found me on top of a high mantelpiece and had no explanation for how I could have got up there on my own!

    im 20 and have been sffering from vivid night terrors and sleep paralysis for years now its getting to the point i still have to have a teddy in bed though my boyfriend takes its place when he stays. he says ive hit him and scream during the night. i have seen the doctors a number of times and they just say its a side effect of my citalopram however ive been having these bad dreams for years before i started taking my medication. its getting on m nerves as i am studying a degree and i nearly fall asleep in my lectures every day my grades are reflecting my lack of sleep please help.





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    Please be wary of Botox being touted as a miracle treatment for bladder overactivity and interstitial cystitis. I had treatment in 2008. A single dose led to part paralysis, and I still have worsening overactivity.I cannot urinate naturally. It is 2015 and I still have to cathererise dozens of times a day. I was assured the Botox would wear off, it didn't. Life is hell, it wrecked my marriage and whole existence. I have had visits to casualty, infection and damage all from a dose of Botox.





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    I had an AVM malformation (Brain Hemerrage) in dec 2005. I hav left-side paralysis with limited walking and nothing no movement in my arm. I have 2 issues: 1) I have filiculitus ( ingrown hair) in the back of up neck. As the pic shows, it's very red, with sizeable bumps and is quite scratchy. I have used; Pro topic cream,Polyfax cream, using light (sun beds), 2) I'm quite heavy. I am 6ft tall with waist 38", 44" chest and a weight of 17 stone. After my AVM in 2002, I was in a wheelchair for about 10 months which meant the weigh gain. Unfortunately I physically can't run and very little walking. I have used Orlistat xenical 120mg* 3 per day to help but I need some more help... Regards, Jim





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    dear jim I have the same problem limited walking after a brain op Witch left me limited use of my right side and epilepsy . I too am on the heavy side but my physio has suggested that one of the seat bikes ( the one you can sit in your chair and build up mussel in your legs while watching tv ) haven't got one yet but in tend to thay sell them at Argos for about 15 pound up ward and thay also do one for arms and legs as well while sitting . Good luck to you hope you get it all sorted .

    I also have a brain avm about 5cm in size i took a brain hemorrhage in feb this year, my avm is right in the middle of my brain and also goes up to the top of the right hand side of my brain the doctors have told me because of the size and location of my avm that it would be impossible for them to perform surgery on me, there was also the option of glueing the malfirmation but again because of the size it would also be impossible so then i was referref for stereotatic radio surgery but was told again because of the size and location that it was to risky as they would have to give me a strong dose of radiotherapy to my whole brain so really i am left with no options to remove it, i dont mind the avm being there i can live with it but since i had the bleed in feb i have been suffering with severe pains in my head which means i am in and out of hospital, my doctors put me on amitriptyline to see if it helps with the pain but it doesnt seem to make any difference, all i want is for the paine but nothing seems to be working any suggestions welcome.

    Hi my name is Melanie and I'm 27 years old. I don't have full fledged Moebius but I do have partial nerve paralysis that affects speech and facial expressions. I was diagnosed at birth and I assume the docs deemed my condition moebius because it was the only close answer for what I have. I still have low self esteem but I get through life best I can. When people ask me to smile or why I look sad/bored, it still hurts? I try to explain why I look the way I do. As a child I was outgoing but as I got older and more self aware of my differneces. I shut down due to stares and mean comments from kids. I dont Being an adult now, I'm just to get my confidence back and I don't have many friends since I stay to myself. Hopefully someday I will be the person I am suppose to be.





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