So CT, MRI and EEG all clear. I was told I have FND and given some leaflets. I now have a neurology appointment end of March. What's next? I don't know what I should do.My symptoms are linked to amnesia/memory and processing, and not physical (fortunately). I now have a complete feeling of disassociation. I feel like my head is a fishbowl and I'm observing the outside world from inside. For the past few months my daily life has gradually become submerged into this fishbowl and reliving previous.
I had another episode last weekend and have no recollection of last week and rest of January is just a haze.
I don't know what to do!!!
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You mentioned "reliving previous" is this related to trauma, previous events?
I think being in the here and now could be a good strategy, don't put too much pressure on yourself and try to relax. Do things that make you smile.
Think of it as short term and I am sure you will get better. If it helps, keep a diary, not of the symptoms, just of the fun things you did that day.
With my son, when he was having his thigh spasms, which were in his words extremely painful and I used to ask him on a scale of 1 to 10, which I later learn't doesn't help, Using "non charged" language is better. Then other days they were numb, because the feeling sensation had been diverted (another neuron pathways, probably due to the "flight and fight" auto response), just a way of the brain protecting itself. Later on in the day they returned to normal possible because he stopped concentrating on them, possible because the school day was over (that could have been a coincidence as sometimes it could been late afternoon) and sometimes earlier because he got distracted and an autotomic movement took priority.
The point in sharing that example is that some of techniques used in helping one symptoms of FND (ie FMD - functional motor disorder) could be used in other symptoms like your cognitive disorder.
Hope some of that helps, I am sure some of the only members can shed some more light.
Very kind of you. Sounds like excellent advice. I've been keeping a log of my episodes that until this week was insomnia .I've taken a week off work which I knew would just give me time to process things, but generally overthink everything.
Yes, I feel like I'm reliving my whole life. I can barely find the words to describe it. Among all of this I cannot avoid thinking about my childhood abuse.
As you say it's a protection mechanism. My brain did this for 25 yrs + before I started getting flashbacks and eventually resulted in a conviction - though nothing can compensate.
Again many thanks. I wish you and your son all the best.
You need to find a way to move forward and you should be getting professional support. Pretty sure thats not about reliving the trauma over and over again.Remember you are a surviver and have your whole life ahead of you. Your abuser, now convicted, will be spending their life, confined with all the time to think about what they did to you and address their demons and the other inmates won't be kind to them.
So you are free now, spend your time with friends and family and make positive memories, take photos to see yourself smiling, look at the beauty of the world around you, immerse yourself in nature and the sun will shine again.
Sorry he had medical issues meaning he was not able to serve a custodial sentence. I made sure after the court case everyone knew. Let's say I kicked up a fuss one evening.
Maybe going off topic, though I understand there may be a disproportionate of members who have suffered childhood trauma.By nature "they" are controlling and narcissistic. The psychological impact is a lot more than the sexual/physical abuse and those actions you could argue have a more emotional impact.
Me too. I didn't let him do anything but the fact that he tried...5 TIMES when i was 12 has emotionally scarred me.... im now 59... the few times i have to see him he smiles and tries to corner me. Yes. Relative.
I suffered physical abuse and despite there being no intent to cause harm, it has a horrific impact on how you handle everyday situations. Not just relationships with others. Abuse is abuse. We're called survivors but it underestimates the impact it can have.
I started having flashbacks in my 30s. I went to the police who spoke to others which then lead to a court case. He denied everything up to the first day of the trial - that in itself tells you the sort of being he is or was.
A few months after the court case, I drove 130 miles to his house. All I can say is that if it wasn't for bin collection the next morning and if his bin wasn't blocking the gate, I don't know what I would have done.
Hi, just to clarify, it was an ex partner that was a bit heavy handed at times and controlling (I guess I just pussy footed at times by fear of him flipping) but woke up a long time ago.
hi and welcome, I was diagnosed in dec 2019 18 months after it all started. I woke up one day and went to work and then it started, I couldn’t walk, talk or think properly went to gp they sent me to a&e then blue lighted to another hospital as they thought I had a stroke. Three days later discharged with a neurology referral (gp not happy got me emergency appointment) . I suspect like me they will confirm FND and sent you on your way. They are still learning about it , it was my neuro-physio was the one to suggest FND and then the consultant agreed. This site offers a lot of advice from others who suffer and with 200+ symptoms it can vary in how it shows up in patients. I had to learn to walk again and once that happened I started talking properly again although I still have problems and my memory is shot (I have had CBD for that) . You will find you have to be forceful but kind when seeking help . Talking therapy, cbd and physio can help . People will tell you it’s all in your head (and it is) but it is real and your not going mad .as I was told imagine your body as the computer (the hardware) it’s the software that is not working properly. Good luck and take care. Kevin
Many thanks. I was in A&E for the second time this week. First when I was worried I'd may have had a mini stroke. I'm already under the care of neurology having been told in Dec I have FND. Nothing seemed to fit even into the 200+ symptoms - or at least my symptoms are mild.
My second time in A&E, was on Friday, after I spent the day trying to track down an alleged missed appointment on Wednesday. My GP told me this, but they only said it was a neurology appointment. I phoned Neurology, and Neurophysiology, and knew nothing about it. I've been awaiting a follow up from an EEG I apparently had on 12th Jan and my only known appointment is end of March - though I'm on the cancellation list. So with no certainty, I just need to know wasn't urgent. Well I got my answer but was treated like a retard. They kept trying to tell me nothing has changed. I said well in paper maybe that is the case, but I haven't experienced amnesia like this and I've suffered a car accident and cycling accident which involved hospitalisation, so i have some experience of memory loss.
Unfortunately, the squeakiest wheel gets the most oil. Service s are stretched but we have to be selfish.
Can I add, as you mentioned you are having amnesia that a loved one could help manage your appointments, taking just one of the stresses away and maybe accompany you if possible. It can be overwhelming for most, letalone someone experiencing all that you are having to go through.
She's fantastic and so understanding. She SEND coordinator in a school, so I've literally just given her a full-time job 😁.She hasn't come across or heard of FND.
Thats if it is FND. I second what 210272 (that hard to keep remembering, can you add a nickname 😉), get the rationale behind the dx to make sure you get the correct support.
The diagnosis of FN(C)D should not be made on the basis of normal test results alone so I would ask your GP practice manager to ask whoever diagnosed you for the rationale for their diagnosis and which 'rule in' signs they used. I am very sorry you are dealing with memories of childhood trauma (very, well done with the conviction although I agree it's not compensation and it doesn't always stop the horrible flashbacks) and wonder if your dx should be CPTSD instead of FN(C)D. Either way I would ask about EMDR therapy since people have had very good results with it and it is available for people with a FN(C)D diagnosis.
Insomnia is ghastly so if you haven't already done a sleep study, that could be another think to ask about. I'd also ask about vitamin and mineral depletion since low levels of magnesium and vitamin d etc can cause dissociative symptoms, as can migraine.
I like Lady4's advice Be kind to yourself and build in as much fun as you can, each day.
Absolutely. I don't think they've ruled other factors and I've already spoken to my GP about stopping / weaning off Sertraline I take due to 24/7 Tinnitus and Hyperacusis.
Some of my symptoms being a side-effect of the medicine.
Good for you and, since you're in the UK, there's a biobank for people with Tinnitus so you might be able to donate your data via that. Has any other treatment for tinnitus been suggested to you (IE not medications that cause horrible side effects)? I got it (alongside the symptoms of MdDS, which are similar to those of vestibular migraine) after an MRI scan and wasn't offered any treatment or support by my (then) GP. But luckily I discovered I could get shot of it using white noise from the internet and I've also heard that using binaural beats can help too (although I don't know how that would work re the Hyperacusis). B beats have the added advantage of being relaxing and joyful (Gregorian Chants, ditto) so help with resetting the balance between the sympathetic and parasympathetic nervous systems. I found a combination of b beats and EMDF really helpful when overcoming medically induced PTSD (aka 'a sane response to an insane situation') which I got from a neuropsychiatrist at a sleep clinic - go figure
I hope you can get a clear rationale for your FN(C)D diagnosis soon and if you need further help - eg with getting on the clinical pathway - Dawn at FND Hope UK is great
I totally get your approach re Tinnitus but it is treatable so I hope someone will pull their finger out and help you get shot of it soon. As for your FND dx, remember it is not a diagnosis of exclusion so they don't have to rule out other things (although from the rare conditions perspective, I wish they would) but they do have to tell you what 'rule in' signs they've used. Apparently demonstrating that symptoms are distractible during the consultation (see the FND wiki ffi) is part of the deal.
Prof O'Leary, who's work I like, has said that FND ed is 'terribly reckless, so practice is reckless' so it is also worth checking what FND education your consultant has had and I'd also ask them if they should be telling people that FND is in DSM during the diagnosing consultations.
I really hope you can keep your career and that you get the support you need to do so since I would love to have had teachers like you when I was at school
Following on from 210272's good advice. I googled CPTSD wondering what the "C" stood for, my guess, "Chronic", actually "Complex" and I found this advice which may help you if you feel yourself going into a disassociative state (on Mind's website):
Try grounding techniques
Grounding techniques can help you feel more connected to the present. They might help you cope with intrusive thoughts or difficult feelings, memories and flashbacks. You could try:
Breathing slowly while counting
Tuning into to different sounds around you
Walking barefoot and noticing how the ground feels
Wrapping yourself in a blanket and noticing how it feels around your body
Holding an ice cube or splashing cold water on your face
Touching something with an interesting texture or sniffing something with a strong smell
Focus on the sensations you are feeling right now.
You might find it helpful to keep a box of things with different textures and smells. For example, you could include a blanket and some smooth stones.
Thank you. I've been/was diagnosed with PTSD. I've often used meditation and grounding. Stress can trigger intrusive thoughts. My episodes with amnesia feels very different. But I'm trying to ensure my neurologist has eliminated everything else.Thank you very much for your help.
Your welcome, if stress is a trigger try and put yourself in less stressful situation (if possible) and maybe have a "figgit toy" or something at hand to grab quickly.
I'm sorry. I fog out also for short periods of time. Tomorrow i go to the Mayo Clinic for tests for gastroparesis.... so i can eat. I would rather have my legs work!
I am sorry to hear about the direction things are going, just know one thing.. as FND warriors we will continue to find ways to dislodge these thoughts and feelings, it will get better!!
I honestly can say your in the right place and talking about it is a HUGE step towards recovery no matter how slow or long it may take.. FNDhope is one of the best places to discuss and read others place in what we are going thru or have gotten past. I truly feel linking the way you feel with others is a massive step in helping you find your footing again.
This forum has been a eye opener for FND patients, Professionals, Families and Friends! Some of us have gotten thru stages of FND some are still finding their place but we share our thoughts as there is such a small amount of resources available to all of us and not very often Doctors are the answer. Know that FND has been recently recognized in the Rare Disease almanac and that gives us a new place of how we approach it.
I have been struggling with symptoms myself for the last 7 years and got my diagnoses about 5 years ago and little by little with the proper support system I am finding my place again. It has been rough I wont lie.. the roughest part was dozens of specialists I encountered who led me down dead ends or into chaos!!
We are all here for each other and have learned a great deal from listening to one another. These feelings, thoughts, loss of existence are only temporary, with your own beliefs and others support your world around you will brighten up once again!
I see so much comments below that are putting you in the right place and mindset and I couldn't agree more with what has been said.
Lastly, sleep issues due to involuntary movements was my BIGGEST hurdle and my therapist worked with me keeping sleep journals and logs and slowly I have gotten to a place where I can have a normal nights rest, its everything to me...
Never hesitate to talk here or anywhere, there is nothing wrong with you!
Thank you for your kind words. It's a lot to absorb and maybe time to consider my career as a teacher. I'd already gone down to part time, with a view to consider what u do, including conversations with my boss and finding new roles I could manage.
i would never want to scare you but sadly I did have to retire from my career at the age of only 34 .. it hit me hard and still does .. take your time absorbing and try to do things that keep you happy even if they may not have been what you used to do .
Actually I changed careers about 9 yrs ago. I had an office job so put anxiety and concentration issues down to being sentry - I've always been an active person.Im certainly not going to make rash decisions and will work with my current employer to look for a better role. I've struggled in the classroom with my hearing and hyperacusis for a couple of years. Having said that I'm not sure if all those ailments are linked.
Thank you for your honesty, I take it as kind words.
I was given a leaflet in December then when I made inquiries I was just told to do more reading.I'm taking 210272 earlier advice; as of tomorrow and asking for more information about how they came to their conclusion - this was even prior to an EEG.
Services are stretched, but there must be a better system and access to more information especially about our medical notes that can allow us to give us more to go on (I have the NHS app but it gives me little to go on).
Turn to us and the FND Hope forums, listen to their stories and gain valuable info that we can now access even if some of the medical professionals are lacking in knowledge.
I subscribed to an email newsletter of a PT passionate about FND in Boston at Re-active (although not a medical professional) but a carer of a teenager diagnosed with FND and CRPS and the second #tip for medical professionals was:
Screenshot of blue text with light blue background.
"I am writing to formally file a complaint regarding the unprofessional and unacceptable behaviour of Dr. Xxxxxxx's, xxxxxxxxx at Xxxxxxxxx. During our visit on 9th April 2023 for xxxx urgent appointment for a CT Scan had been scheduled for 1230pm. Dr. Xxxx informed us the appointment needed to be cancelled as he had no details from the doctor. I offered and tried on multiple occasions to explain my symptoms, that by now I was concerned about. He displayed a level of arrogance and dismissiveness that I have never experienced before in a medical setting. What was more concerning was his lack of professionalism towards the accompanying nurse, who was helping to offer an apology for the cancelled appointment and advice on the next steps.From the very beginning of the appointment, Dr. Xxxxxx showed a disinterest in discussing Xxxxx symptoms or addressing our concerns. Instead of actively listening and engaging in a meaningful conversation, he was dismissive and displayed a lack of empathy, making us feel as if our concerns were insignificant. Xxxx was referred to the Hospital by his general practitioner Dr Xxxxxx from Xxxxxxx Health Centre due to episodes of vertigo that was more recently accompanied by amnesia. Dr Xxxxx’s disrespectful behavior not only impacted the quality of the medical care we expected to receive, but was more about clearing a backlog, for which he told us that he was there to do. Whilst we accept that procedures may need to be followed, we went to A&E where the staff .
Moreover, Dr. Xxxxx’s conduct towards the staff nurse was entirely inappropriate. On multiple occasions, he asked the nurse to be quiet when she tried to apologize for being called in for a cancelled appointment. After speaking with the nurse after leaving the consultation room, she confided in us that she was used to such treatment from Dr. Xxxxxxx, or maybe she meant other members of staff. It is alarming to know that a healthcare professional who are supposed to work as a team with their colleagues exhibits such a toxic attitude, creating an unhealthy work environment."
I can completely relate. I was having really bad amnesia spells prior to my diagnosis. My mind would "check out" for days at a time. Just like you, I had no memory of what happened. It was a really scary time. I think the best thing you can do moving forward is to have the mindset that your neurologist will determine the right treatment plan for you. It's easier said than done, but be patient. You'll get there. Everyone does, but sometimes it takes some time.
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Be kind to yourself and build in as much fun as you can, each day. 
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