Im.desperate to connect with any FND peeps who have had speech impairment and ongoing pain that cant be helped with drugs

[MatBridges]

Hi guys. Some of you said hello when i first signed up. Its not really been as long for me that ive been diagnosed as FND. My symptoms are stuttering and major pain. This all started when i fell over and smashed my head on a edge of a door. At first i was fine then about a week after my symptoms started. Thats when i was sent to the stroke department and had all the tests done. All clear so the doctors and neurologists said I had FND. This was followed up with speech therapy and heavy pain meds to slightly ease my pain. I was on oxycodine, mersyndol,diazepam( for the bputs of major anxiety and panic attacks that i get when its wet), and anti depressants.

Ive now seen an outside neurologist that has put me on Entrep which has made the pain worse and has told me to have an injection to block the nerve going to the left side of my head to see if it helps. On a good day i can sometimes get a sentence with minimal stuttering, but on a bad day can barely speak.

So id love to talk with other peeps that are in the same boat as me or have had the same/ similar symptoms to see wjays worked for them

I dont want to.be smashing over 3g3ogf codine a day to be still in alot of pain and discomfort.

Mat

[Paddoodlz]

Hi Mat - I have had speech issues as a result of FND for years. My speech therapist provided me with a number of speech exericses to use which proved helapul . The biggest help was the facial relaxation - trying to relax the face muscles. I have facial droop on my right side most of the time now and I do have my speech from time to time but get giberish alot more than i used to. Each new relapse tends to take more of it away. I do have a great app that my speech therapist told me about for when I cant talk . Feel free to message me anytime.

[Collie44]

Hey Mat .. you have met your soul mate possibly . the only difference in our stories is that I refused the pain meds becasue i was offered opiods .. everything else we parallell. The pain i managed with pure lavendar oil, however i put preface on managed because it was 'not managed' at all .. and I absolutely nearly went stark raving mad from the pain. Just before my diagnosis, I fell and hit the back of my head on concrete .. I became so ill after that fall, that I suspect that i suffered a concussion which led to longer term symptons .. that was September last year .. September to October 27 ... i went down hill so badly that I seriously thought that i had develpoed parkinsons disease. My memory was so bad i literally became demented .. (you can't be demented they say unless you have disease on the brain) With FND, we do not have disease on the brain ... Anyway. My ability to walk completley went from fall to diagnosis. I lost my ability to speak initially .. my girlfriend was talking to me, and she said that i was laughing hysterically and that no matter what she said to me, I would not get up off the ground. She said in the end, she said to me, that she was going in side and going to just leave me there. She had absolutely NO IDEA that i had serously hurt myself becasue it was 2am in the morning when this happened and we were at my car getting my suitcase. You see she was going away the next morning overseas, and i was looking after all the animals. so .. apparantely i finally got up .. now I have no idea whether my friend helped me to get to the bedroom .. there is aboslutely no memory. The next thing I woke to agonizing pain inside my head. I don't know if i was or not, but I was screaming out get it off me get it off me .. my friend had placed ice packs on my head .... i don't know if i went unconscious when she lay me on the bed or whether i feel asleep .. i have no memory .. that is all i remember until hours later i vaguely remember shuffling around and my brain saying 'they are going now' .. but i could not speak and I could not get up. I literally could not move - and my head ... the dizziness was vertigo, the pain was indescriably horrifci, my vision had gone, .. basically within a rew hours my entire functioning had simply gone. I just did not understand that i had hurt myself so badly i possibly had a bleed on the brain - and my friend and the family had no idea either. They left and i was in the house on my own. Fast forward a week. I was on my feet - but the jerking, the lurching, the loss of balance and coorindation .. totally and utterly gone. To this day I have never got it back. That said, a carer came to check on and of course immediately went into crisis mode .. off for brain scanns .. nothing shows .. i am cleared as fine safe no bleeds, etc etc .. My life has been one long living nightmare from my last birthday .. oh yes . the night it happened was my birthday. I would joke and say "oh well that went off with a bang!" .. by this i was diangosed .. I had no idea that i had most likely sustained a mild traumatic brain injury .. i still don't know .. but i have every single symptom indicating i do, and i hope to know next week. The jerking and inability to speak straight after a fall like you experienced, is called ataxia ... it is a common response to a bad fall or concussion ... but here's where it can get tricky .. FND mimics other very serious disorders like Parkinsons Disease, Stroke, Multiple Scleroris etc .. however .. those disorders are all diseases of the brain .. FND is NOT a disease of the brain - so therefore it can not be any of those above disorders IF you are strictly sitting with the profile of FND and falling ... and how that can play out and trigger FND symptoms like ours. Over on facebook there is a group FND Australia and New Zealand . that group, like this one is invaluable .. At the time of diagnosis my Professor straight away told me to listen to Professor Jon Stone - his website, neurosymptoms.org is a bible for FND ... Professor Stone explains is a neurologist. He explains everything very simply, and in a way that you will understand - preface .. if you feel overwhelmed, frightened or like you've gone on a complete mind bend .. reach out .. we are all here to support you mate. YOu can chat me privately through FB if you want to .. your word 'desperate' denotes that you feel you need some one on one and some immediate responses .. happy to help, however i can. Over at facebook if we can type the word admin into our posts and that way Admin respond directly to your questions, or need of support etc .. like this group everyone is super supportive, and the majority will understand your challenges around your FND Diagnosis ..

[Forsaken101]

Hi Matt. My daughter has just been diagnosed with FND after a sunburn trigger. She has suffered full body nerve pain which was immediately relived with Gabapentin. She is now off that and on Topirimate and the pain has not returned. Not sure how helpful this is but if the pain is nerve pain I imagine a neuropathic painkiller may be a better route to breaking the cycle. Best wishes.