Has anyone ever experienced or read about nystagmus being part of the fnd collection?
They say that vertigo is what started this for me and that nothing now is organic. I don't believe them. But I'm trying to find any reference to nystagmus as a symptom of fnd. Any help would be great. Thanks guys blessings to all.
Hi I have flares of nystagmus and have done for many years now. If you’re really concerned I would suggest an opticians appointment. They referred me to an eye clinic at the hospital. It often helps by taking another route into hospital clinics as they’re not directly involved with your care. Hope this helps. I know it’s not easy so feel free to vent your frustrations and feelings ♥️ Xx
Thanks Sutta,
Yes, I have visited the optomologist. Waiting on new glasses from the lab. Hoping that will help, so far
I continue to have this problem.
My concern is that they will throw this into the F pile instead of actually addressing the issue.
Can vertigo really last 8 months? My eyes still jump and I'm still spinning at times. I really want off this ride.
Blessings to all
Hi Daesin.
I know what you mean about the FND diagnosis. I'm sure if l said l had a broken toe nail it would be down to FND or fibromyalgia.....
I don't dispute l have it but when it comes to vertigo there should be more investigation.
I have had 2 appointments cancelled with ENT due to covid. And during this time my vertigo/ balance has really interfered with everything. I have a history of bppv but this is now vestibular migraine and a different kind of dizziness.
The reason l had appointments was after visiting the audiologist and having the goggle test it showed nystagmus even though l didn't have bppv at the time just a headache. So l was due to have other tests.
I have in the past had successful treatment with the epley but dare not try and do it myself as my neck is so painful and don't want to make things worse. I sometimes feel like I'm in the verge of a siezure!
Called doctor 3 wks ago and she reckoned l had covid.....??
I do know from experience that vertigo can last months without treatment. But it is a symptom of something so it's a matter of treating the cause.
I hope your new glasses help you but l think the inner ear is usually responsible for nystagmus. You have my sympathy this condition is hellish!.
Hazel
Hazel - far too many people with balance conditions wind up getting an FND diagnosis so unless your FND dx was given according to the gold standard, I would question it. I don't have FND but do have vestibular migraine and yes, some drs try and make out that it's all in our minds not our heads, but they are routinely debunked and ridiculed by this patient population. The fb VM group I recommend is called Vestibular Migraine Professional so if you're not already part of that, I hope to see you there soon 
Someone I know via the Life on the Level network was also misdiagnosed with FND purely on the basis that she didn't have dementia. Took her years to get diagnosed and although she's doing well, her recovery from VM was delayed by the FND dx.
PS. Hello again Daesin.
Just looked at your previous posts and it looks like we've taken similar paths (health wise) didn't realise you had all the other symptoms fnd throws at you. It's a long and winding road finding help so keep us informed on how it goes.
Hazel.
I hope they find the underlying organic cause and don't ascribe it to FND. Lots of people with balance problems wind up with this diagnosis and it's so wrong because so much good scientific data gets lost.
Oh absolutely. Fighting this tooth and nail. The dx has already cost me so much.
I can't renew several licenses. Personal and professional. I can no longer pass the vetting process to work with children. So years, decades of expertise just burst into flames.
It's a disassociative disorder, so I am not in my right mind they say. No one will take anything I say seriously. My primary care physician is caring but so shiny & new. I'm her first surprise nutjob.
When I leave this area I will severely limit my appointments and redact my medical history. Like it never happened. I won't ever feel comfortable going to another provider. Thank God we are not in a NHS type situation where files are centralized.
Anyhow, blessings to all.
Yes, the damage this diagnosis can do is horrific and I really feel for you Daesin. I had to fight hard to get the FND dx over-ruled by getting re-diagnosed with the condition I do have but at least where I am in the UK I was entitled to a second opinion. Apparently that's not so easy in Scotland where the Functional Franchise is very powerful.
I disassociate via meditation routinely, which is considered healthy. But I consider a dx of dissociative disorder to be almost entirely speculative, having read some of the papers about it. It is a relatively common symptom for some people with migraine and grounding can help alleviate this symptom. If it does for you, I'd take that as proof that you are in your right mind. I'd also suggest that your plans for the future are indicative of very good mental health although it is horrible that you have been put in this position by your caring doctors.
Blessings to you too and here's to pandemic as a portal leading to a kinder, more equitable world. Naive optimism suits me better than a naive understanding of dualism or whatever it is they say we've got.
greetings, fnd also began for me with severe vertigo.
I'm having trouble with the diagnosis in general. do you continue to have vertigo? Is it constant or transient? I just can't imagine that this is going to continue to spin and not have an organic cause.
Did they ever find the cause of your vertigo? Thank you for sharing information.
Blessings to all
my initial vertigo lasted for a good two solid weeks. could not do anything except sleep. very little eating and had to eat laying down. vertigo then morphed in to a fishbowl effect and has subsided, but my balance and gait are still jacked up. no cause found, although it is believed that FND can be a comorbidity to PTSD.
God bless
Thank you for your replying. My vertigo lasted substantially longer than anyone I have talked to. Which brought about a lot of dark thoughts as you can imagine. It was back-to-back spins for nearly three months.
the spins will knock a thought right out of your head and take a few IQ points from you.
Yeah I don't walk very well now either... my balance is totally fried. ENT said my ears are fine but that I was a perfect textbook bppv. yet here I am almost 8 months later and still getting room spins throughout the day.
I really don't understand, and severely dislike this process. They haven't got me squared away yet. Well, anyhow you have a wonderful day and blessings to all.
do you have a neurologist?
Yes, well kinda in between right now. I was scheduled to see a neuroimmunologist but unfortunately that appointment has been delayed from January now to July. I did see a neuro ophthalmologist who prescribe prisms for my lenses to counter effect the double vision.
Sadly my standard neurologist discharged me. He said that my issue was psychological and not physical. Despite not listening to me or seeing the results from my hospitalization. So the nystagmus the lazy eye the double vision all of these things that are of organic base have been dismissed by him. Migraines that I've had since I was a kid. He did not listen. He heard the words stress and ran with it. So now I'm fighting the label to get the care that I need.
I have found this to be a black hole diagnosis. One lady agreed and said she can break a toe when they would find a way to label it as fnd. So basically I'm just trying to get myself back to where I need to be with very minimal help from the medical world.
my neuro named it for me as FND. i also spoke by phone with dr. kim bullock at stanford in california. she confirmed that for most, the recognized treatment plan for fnd is a combination of psychiatry and physical therapy. i do both. also, there is a book she recommends. i can provide you the book title a bit later today. God bless.
is it FND or Ataxia 
confused
World FND Month - APRIL 2020
Cycling and FND
