Functional and Dissociative Neurological Symptoms : a patient's guide

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More Feedback - Page 17

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Angie 1st Dec 2015

A friend put me onto you site and I love it! I have been having seizures for 15 years now, but no doctor has been able to help. The last specialist actually laughed at me while I was having an attack and thought I was simply showing her something. I don't have a diganosis, but mine last for around 4-8 hours and with them I have vomiting and diarrhea with mine. They seem to come after I eat certain foods. I have diagnosed myself with fat malabsorption. If I have even coconut oil in food or on my skin I have an attack, often a few hours later. Severe pains in my neck and head and seizures where I cannot communicate at all. I feel like I'm pushed away from myself. It takes my digestive system days sometimes weeks to recover. Would love a diagnosis, but have been to so many doctors in Oz that I've given up. I've been put on heart meds (I had AF) and migrane meds, but went off them all. No difference on or off. Before an attack my heart goes into AF then tachycardia and there's n!
othing I can do to stop it. I was healthy until a severe case of food poisoning from seafood set this chain of events off 15 years ago. I would love feedback on my condition. Doctors in Australia are not helpful and I have lost all faith in them.

EDITOR: I cant offer a diagnosis Angie. If you do have a diagnosis of dissociative attacks then I'm glad if the site is useful to you

Karen 8th Nov 2015
Oh My! I wish I'd been pointed in the direction of this website MONTHS ago. I have had a lot of the issues mentioned for over two years and have only just got a diagnosis. I saw a neurologist who dismissed some of the symptoms as 'in my head'!!!! Grrrrr.... I am a 46 year old female who up until 2 years ago had a brilliant social life, went to the gym often, had a car all of which I have had to give up. The fatigue is horrendous. I have been taking Amitriptyline since May (low dosage) to help me sleep and it hasn't worked so far.Some days it's all I can do to get dressed. Other days I have a bit more energy, but not enough to lead a 'normal' life. I have been worrying constantly about work and about what other people think ie: I'm enjoying been off or 'pulling a fast one'.

Those who truly know me, know I hate being like this, hate being off work and HATE relying on people to help me. This website has made me feel so much better, knowing that other people are going through the same things AND more importnatly, explaining fully what is happening. I have finally been prescribed Pizotofen which I am hoping does the trick. Thank you very much for explaining everything. Best website ever

John 26th Oct 2015
The purpose is to seek help & advice for a very distressed person! Please, if you know where I can go for help & advice that may improve Ruth’s poor quality of life, please let me know.Ruth’s daily ‘no warning’ falls from multiple seizures triggers cause continual & ‘cumulative’ injuries, adding to Ruth’s existing long-term spinal & drop foot disability. Ruth’s quality of life & independence (she gets no care) is almost nil.I’ve searched through PNES/NEADS support sites, forums etc, find little research on ‘non epileptic’ seizures or details of ‘no warning’ like Ruth. In particular I find no one else that has no advance seizure warning, what's being done to address that in people like my friend Ruth?Are new meds being developed, is it a simple matter of getting training of the subconscious, perhaps Ruth’s actually has a autonomic system malfunction.An orthopaedic surgeon said he’d never seen anything like it, it’s as though a switch shuts Ruth’s off, on the ground Ruth exhibits Myclonic leg jerks.You can imagine the constant emotional stress on those around her, awaiting a fall, knowing they’ll have to cope with injuries consequences arising.

EDITOR: Although most patients with dissociative (non-epileptic) seizures have warnings, either sometimes, or perhaps in the past, many patients report events with no warning at all. Often that is because there really is no warning. In a lot of patients, there is a brief warning that they forget as part of the attack. Friend and family may notice them going a bit blank (dissociating) for a few seconds before. Treatment is more difficult but not impossible and involves looking at the episodes from every angle, preferably in the context of a psychological therapy to find ways to get control back, and if possible, learn to remember those brief warnings. In some patients, for example with drop attacks, this approach may not be helpful. Medication helps some patients.

Ganesh 20th Oct 2015
Many thanks for this wonderful information, I have read the details on functional weakness which I am seeing in my wife's condition. Many doctors were not able to zero in on the diagnosis. Now I am hopeful of recovery albiet slowly. Can you suggest any medication along with the phyisical exercise

EDITOR: Ganesh, please read the medication section of the site for an answer to your query

Wendi 6th Oct
I am a pediatric psychologist in the U.S. I primarily see patients admitted to our Children's Hospital for evaluation of neurological symptoms. I have found this site to be profoundly helpful not only to our families, but also to our trainees. I have it listed on all of our handouts on functional symptoms and include it in all my lectures to trainees. I am wondering if you have considered adding in a child section. While much of the information applies very well to children and adolescents, I have struggled to find good information for patients and families on how it presents in childhood and how to handle social/school issues relating to symptoms.

EDITOR: thanks Wendi - you're right we could do with more information for families including parents of children and for children themselves - its on our 'to do' list!!

Roxanne 29th Sep 2015
Many thanks and much gratitude for this lovely and comprehensive information source, the only of its kind to my knowledge. With such an unfamiliar, complicated and misunderstood disorder, this information would have been extremely helpful to have upon diagnosis. Our local neurologist's office will be receiving this link to help future patients so they won't be left to flail and research but instead hopefully go forward with proper therapies and successes.

Linda 16th Sep 2015
I was diagnosed last Thursday, 9/10/2015. My doctor was very nice and explained to me that migraines and fibromyalgia also don't have any "explaination" for symptoms. Why, if the functional MRI equipment shows defects in the brain with all these diseases, do those of us with Functional Neurological Disorder have to see psychiatrists, neuropsychiatrists and psychotherapists? Why shouldn't my daughter, who suffers from migraines, be sent to one? Why is my friend with fibromyalgia not required to seek psychiatric help? This part doesn't make any sense to me and it shouldn't make sense to anyone reading this. It is clear there is a lot that needs to be out in the open so patients don't feel psychotic. I like this site the best of all the FND sites, but there are still places in it that make me, as a victim of the disease, feel like I am on unequal ground with other sufferers of diseases of unknown origin.

Why am I required to seek mental illness treatment. Oddly enough, when I "broke" on June 12, 2013, my bipolar disappeared, so no my thoughts are healthy, but my body is broken. I actually prefer the switch. I can't drive, had to give up my company, am usually confined to a wheelchair, have seizure-like episodes, shake all the time, have swallowing issues, slurred and stuttered speech, and can't work and lost nearly every talent I had. This disorder has taught me how to work harder for what's important--my family and my music. I have those.

COMMENT: Linda makes an useful point comparing functional neurological disorders to migraine and fibromyalgia, something Ive already done on another page on this site. There is a good argument that all these conditions have psychological aspects which can benefit from psychological treatment and all have biological aspects too which should be appreciated and taken in to consideration when thinking about these disorders. There is a paradox here that there is much less stigma for patients with conditions like terminal cancer or multiple sclerosis being referred for psychological care. Arguably the main reason for that is that those are conditions that everyone knows are 'genuine'. The issue therefore may not be whether psychological treatment is good or bad for some people but whether we can overcome the perception that Functional disorders are not genuine

Kate 16th Sep 2015
Thank you so much for providing this website. I was recently diagnosed by a Neurologist as having FND and my neurologist did not explain to me very well what the disorder is. Coming on this website was like a god-send. Everything is written in a way that I can understand. I cannot thank you enough for this wonderful and informative website!

Carol 11th Sep 2015
Have today been diagnosed (by neurologists and physiotherapists), with a dissasociative disorder, with many manifestations - including fatigue, insomnia, functional gait disorder, poor balance, etc. Have had mental health issues most of my life and was already traumatized before starting school. Lived abroad for 37 years and was treated for schizophrenia, bipolar disorder, schizo affective disorder etc. Became too ill to work, and recently moved back to England. Developed problems with gait this spring. and was referred to neurologist and physio. Have been housebound in periods the last two years. This diagnosis really makes sense, so I'm very relieved to have it. However, I need to be able to go it alone and 'fix myself', but need some guidance. This website looks perfect for that purpose. Thank you!

Carole 15th July 2015
Like many of you 'out there' MUS 'disease' has taken away whole chunks of my life. Also like many of you I, too, have had the CAT and MRI scans, countless blood tests and, sadly,as I see some of you have also been down this road, have been made to feel as if I am a pathetic neurotic, an [?!] elderly lady with psychological problems or merely a hypochondriac looking for a sympathetic shoulder. Yes, I'm 69, yes life has had it's ups and downs ( tell me whose life hasn't) but one thing I have ALWAYS been absolutely certain of is that my symptoms are neither rooted in, nor enhanced by, imagination or psychsomatism. I am one of the lucky ones because I have been directed to this specific web-site. Finally one of my G.P.s referred me to a specialist who was quite remarkable in bringing me up against my frustrations in not finding answers to my often painful, confusing, numerous and debilitating symptoms. It was he who suggested this web-site - which is equally remarkable. So a heartfelt THANK YOU Dr Jon Stone, whoever you are.

My symptoms cover many listed within this site. A large percentage of them are on the right hand side of my head, neck and glands, but affect my entire body and also my personality. In fact the symptoms are miriad and any combination of them can occur on any day. As I have said, whole chunks of my life have been stolen away by this disease; but whatever it is, it is not killing me (hopefully) and it is not a return of the lobular invasive breast cancer (8years free). Therefore, while I know there will always be bad days I now strive for maximum enjoyment of the good times. This doesn't mean running a marathon, sometimes I wander through my wildlife garden and marvel at the butterflies. Yes, we who are afflicted by this know those days when we want to hide in the cupboard, creep off to the duvet, cry our eyes out, despair in not knowing where this will go, IF it will go, we all know the depressions, the terrible self-doubts, the inertia, the dread, the personality changes we don't understand, the new needs we don't understrand, the relationship changes.....et al....et al......

I have no idea where my life will go from here, none of us do, and that is why diagnosis is important to us; we need a reliable 'peg' on which to hang comprehension of what is happening to our bodies and our minds. We need our lives back on track. Well, after all this time I cannot see my future holding out any handy pegs or that my life will change miraculously back to its' old safe harbour. I am changed irrevocably and I am learning to live with an almost different and deeper persona. So, yes, let's thank our lucky stars that we have the web and places like this which will help us to live in a different way - but to LIVE......

Bridget 10th July 2015
ive just been told about an hour ago that i have functional symptoms. and have most of the symptoms on the list. its a bit of a relief to know. and thank you for this page

Mark 5th June 2015
Thank you so much for this information.I have been seen by 7 neurologists.5 were movement specialists.I suggested the possibility of a psychogenic factor to the first 2 They rejected the idea.The next three did not suggest it on their own.Along the way diagnosis ranged from RLS,a possible tic and mild scoliosis to a flat "I don't know what that is".

Yet only when I suggested it to two general neurologists was it accepted.Now it is my diagnosis of record.It took nearly four years.Amazing,no? Unfortunately I can't access a neuro-psych with Medicaid.I'm now trying to locate a CBT who,hopefully,has some experience treating psychogenic disorders.Every day is a fight to sijmply hang on to some hope I will finally locate the appropriate physician.