Carol 14th January 2014
hi am carol and i spent about 3 years feeling as i though i was going mad. My foot was turning and my life was hard. I started taking fits and episodes not knowing who was beside me, with child like behavior and feeling dizzy. But most of all i was scared , scared that i didnt know wat was happing to me. Then my doctor sent me to see a different neurologist, at last someone who understood and give me a reason for every thing - a diagnosis - functional/fixed dystonia and disocciative episodes. My foot turned in again and I still take eppisods but between my neurologist, GP and mediction ive started sleeping again and and started trying to get better. - a lot better a bit at a time. I was able to understand thanks for reading my story. If it helps one person i'll be happy, thanks
Jean 13th January 2014
I have seizures daily, sometimes 3 lots a day, I'm pretty out of it after them,I fall quite often, I have drop attacks and balance problems, paralysis and other symptoms simialr to these along with some cognitive symptoms like trouble reading knitting patterns, some speech and vision difficulties. Symptoms change but there are always some there, I still feel that everything is different to the day I had the drop In Asda all that time ago, it's like my world shifted and hasn't gone back the right way. On the positive side I wont give up, I do what I can when I can, I make lampwork beads and jewellery and other crafts and if I can't do something one way, trying another will sometimes work. If I cant walk forwards sometimes turning and walking backwords will work for a short while. I can tell more often when the fits are coming and try to put them off, which I sometimes can for a while)And although some days they knock me out , on other days I can go back to what I was doing after a bit of time. I've seen quite a lot of info and new groups starting (facebook etc) so have been reading about what can help. The website is such a good resource I'm glad you set it up. Thanks
Melody 3rd November 2013
Thank you very much for this website. Have you done any research on the connection between trance like brain states and functional neurological disorders? I have "psychogenic attacks" and dissociative symptoms. At one point, I started a very intense meditation regiment to try and "relax" in hopes the attacks would stop. The myclonic jerks stopped, however the dissociative experiences got worse. I found that I could very easily enter a blissful state while mediating. I experienced improved mood, more energy, and better focus. Unfortunately, throughout the day my brain would sporadicly enter into dissociative states - sometimes feeling super "high" or drugged. I'd begin to slur my speech, sometimes I would be unable to use fine motor skills. My brain seems to be very susecptible to trance states. I stopped meditating, and the random dissociative attacks stopped. I'm wondering if this is the missing link in the research,
Editor note: Thank you for your comments. Your experience is similar to other patients who find that they are more likely to have dissociative (non-epileptic) attacks if they are resting or not focusing on anything. See the advice about attacks on 'Attacks -2'. It seems that people are more likely to dissociate in these situations. This is why intense meditation can sometimes make dissociation worse. However, some patients do find it helpful and can use it to gain better control of their symptoms as well (which you also describe).
Cookie 14th September 2013
Hello. I have read this website over and over and find the information wonderful, however believe I was wrongly diagnosed and sent here. Having had an microvascular decompression in 2009 pain around the wound site is a trigger for severe debilitating pain to the neck. Stabbing sudden pain to the area of the wound and the wound being sunken in and dipped as clearly identified, no examination was given at the time by the Neurologist, due to having triggered the pain on a very long journey into London to be assessed. Background history was not given correctly and facts incorrect by referring Doctor who had already spent two and a half years treating me for Dystonia. To see a Neuro Specialist on Movement Disorders to have completly ignored the level of pain I was in for me, sadenning and showed a total lack of care and professionalism to have then taken me into a room full of students not even able to walk properly at the time, asking questions I was unable to reply to due to the pain, rather surprised at his findings for a 10 minute meeting. Many of the symptoms here are not what I identify to at all. A shame that a physical examination was not done, as it would then have been extremely clear of the issue. I was 2 hours away from medication that would have eased the pain for him to have diagnosed properly. You feel so vulnerable when you cannot communicate when in that much pain. Due to this over four years now of not being diagnosed properly disappointed and back to square one though finally going back to the original surgeon. How I had wished that I could have come here to see and find answers. I so want them. I came here with so much hope and acceptance. How desperate we become to be heard. Hoping others do not ever go through such a day and read so many that are happy and relieved. Bad experience for me. All the best to others.
EDITOR: Some patients with functional disorders are incorrrectly misdiagnosed. Studies suggest this happens in less than 5% of patients. This may seem high but this is how often doctors get it wrong in the other direction -eg they think its epilepsy or multiple sclerosis but it turns out to have been a functional disorder all along. See Misdiagnosis for more information.
Mark 10th September 2013
I'm a behavioral neurologist in practice here in the states, and I was sent a link to your site by a colleague who is a neuropsychologist. I find your website to be very useful, and plan to routinely point my patients with "functional symptoms" or Somatic Symptoms Disorders to this site for more information. Very good job, indeed! I don't anticipate this to be the solution to all aspects of caring for these patients but I hope this will help my patients understand what's going on with them a bit better.