My question is could I have FND? I've read so much in a short space of time and in some respects it has severe physical effects and on the other hand iit seems a very broad diagnosis.
Here is my story..,
I've had tinnitus several years, though in the last two years pretty much no sound can mask it. The only time my tinnitus really bothers me is at night and Insomnia is now taking its toll. Thankfully I'm taking Sertraline which certainly helps.
Several months ago I started getting vertigo/nausea which is almost constant and sudden or up and down movement make it worse. I then had an episode of forgetfulness and amnesia whereby I could barely recognize places along familiar route to work, and lost about two weeks. I had a similar episode a few weeks ago and more frequent short-term memory episodes and recall issues. I started to fear dementia.
So I've had a CT scan and MRI scan which hasn't shown anything. I thought it may point to insomnia or possibly side-effects of Sertraline. Then this week I had a follow up Neurologist appointment. He suspects FND symptoms. So I am awaiting an EEG. From my reading and understanding, so far, I tick the Functional Cognitive Symptoms and Persistent Postural Perceptual Dizziness (PPPD) boxes.
However, I found a study on "The characteristics of cognitive impairment in subjective chronic tinnitus". I score severe on the Tinnitus Handicap Inventory (THI). Therefore 'm not 100% convinced about FND unless they are one of the same. Well I know need to discuss this with my neurologist but I welcome an EEG to be thorough. I also suffered a head injury 3 years ago.
Can anyone relate to this? Thoughts?
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daverussell
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Unfortunately, I can't but I can say don't accept the FND diagnosis on your record just because of a couple of similarities. Too many people are being labelled and not given access to further tests. Think EEG is for epilesy as the symptoms need to be present at the time of scan.I am sure others have mentioned Tinnitus, put it in the search bar and read other people's stories but don't assume what medication works for one, would help you, discuss with medical professionals too.
I recently downloaded a link for symptom checker, which I believe is used, let me see if I can find it again.
Sorry, can no longer access the article or any other related ones within in the paper (requires subscription). I couldn't view it properly on phone otherwise would have taken screenshots. Can anyone else share screenshots of diagnosis tests they use for FND.You can check out the Isobel Symptom Checker but another member here pointed out its not always up to date and don't use to self diagnosis, just might spark a few questions for your Neuro appt.
Thank you. I've been a member of the HealthUnlocked Tinnitus UK group and posted this question too. In fact I've been a member a few years and frequently contribute.
I like to contribute and reassure people that Tinnitus is something that you can live with.
Have you had a hearing test recently? What were the results?
Many conditions can cause tinnitus and vertigo like Ménière disease , vestibular migraine's, Inner ear autoimmune disease, Thyroid issues, blood pressure problems and the list goes on don't rule out anything.
Actually Labyrinthitis and Ménières was top of my list last week. I'd discussed with my GP and audiologist that I understand the endless list my symptoms could equate to.
My Tinnitus is a result of continued hearing loss and damage to the ear drum from grommets fitted when I was a kid.
The back story to my recent 'plight' evolved around ENT and a discovery they made. I'd put my condition over the last few years to Tinnitus and Hyperacusis. During my appointment they found a hearing aid done in my ear. This was from previous hearing aids I had and stopped wearing 2 or 3 years ago (black, not clear). This had improved my Hyperacusis over night or at least the painful/unbearable aspect of suffering over a similar duration. I had (to) learned to live with it.
My plight began when I realized there was something else.
It sounds as if your vertigo and tinnitus is directly related to your issues as a kid …. Hearing aids are not a fix to any hearing problems just what it implies”hearing aid” and sadly the use of hearing aids as in my case caused my hearing problems to become more pronounced (they actually take over for your hearing) and I ended up deaf as a result in one ear…. I know that we always look for a reason why are issues seem to crop up out of know where but a hard honest look you probably can see why the hearing issues are ramping up ….. I use a product called Lipo Flavonoid plus for (ear ringing) I swear by this product they also have a new one out for balance which Im also going to try … these are not cheap and can be purchased on Amazon and they may not work for you but you won’t know unless you try …. If your desperate like me I would try anything to take away the ringing… anyway this product works for me …. I have Meinere's disease which is NOT and easy thing for any doctors to diagnose you can’t simply look at someone and say meinere’s and no blood tests diagnoses it either and many things are very similar… basically its a messy misunderstood disease.
Absolutely 100% with you on the Hearing Aids. I'm conscious about not being able to get used to them, or equally, becoming too dependent on them.I've avoided any claims about so called remedies for tinnitus. I take Sertraline that, in a word, prevents me from putting my fist through the wall. Equally, you could say I'm dependent on those now.
I have to consider my career etc. which I've already switch to teaching from software development. My current boss has been extremely supportive - so the grass is not going to greener whatever the case. I'm a strong believer in soldiering on.
What other issues are you actually having outside of the tinnitus ? I know you stated above but is there other things besides cognitive impairment issues and sleep problems?
This is what I have think I’ve been dealing with for past few years blaming my issues on my Meinere’s when actually Im thinking I could be having Vestibular Migraines (presents with and without headaches) I also have every single issue you have minus's the sleep issues .
That's an interesting read. I've not suffered migraines (in the traditional sense) and they don't run in the family. I've never suffered travel sickness, though I have suffered sea sickness on a couple of yachting holidays.I'm very much streeing away from FND now I've read more and how my hearing symptoms are not a result of anything other than hearing loss. Unless my Tinnitus has finally, after several years taken it toll on my brain and sending me around the twist (if you'll excuse that phrase).
When you read these articles don’t take every symptom as all or nothing because not everyone will suffer with all the symptoms that are stated …..You can have migraines without headaches.
Why don’t you get your vitamins check because low vitamin B12 can also cause tinnitus and magnesium a couple of hours before bed helps with sleep… All of this is just food for thought!
Absolutely. These are very difficult to diagnose and very much part of a spectrum of disorders. For the most part sticking on a label that gives it a name gives us some relative peace of mind - if nothing.
have you had your hearing tested, I was referred to ENT and the outcome was a hearing aid for left side and this has helped. I was also given a tilt test and it got rid of nausea and dizziness
Hi eviedotty . Yes I have mild hearing loss. I have mixed success with hearing aids including having had a dome removed, that was wedged in my "good" ear for anything up to two or three years. As it happens I have a follow up with the audiologist today.
I was speaking to someone last week who has been diagnosed with labyrinthitis and the tilt test helped them tremendously.
Thanks for your response and everyone for making this a great community.
I think with so many symptoms and so many opinions, things can get rather complicated. Outcomes in the US healthcare are not good so always keep that in mind, but not really dwelling on that because it can support negativity and be discouraging.
What you are describing from my experience, is just irregular movement of energy in the body and brain. Hard to pinpoint why this happens and the healthcare system does not really understand it either. How to treat it can also be challenging. Just remember everyones body is different. Experimenting with a wide variety of treatments designed to regulate body energy movement is ideal for me if that helps. I think I did not have a choice. I was self taught because I did not have any support and was having seizures. I had a choice to fight or flight. The seizures could only be tolerated by my body for so long which was a freeze so I chose to figure out how to live with it. And it worked for me!
Hi Goodliving, you are spot on. I have the same attitude with my tinnitus. Acceptance is key but understanding what it is a big part of the journey and that is where I think I've come undone.
Thank you very much. People like yourself make this is a great community.
hi Dave - I had head injury ( top left side back of head) and some concussion more than 2 years ago - this led to short term vertigo and an ongoing mild vertigo. Then my horrendous reactive tinnitus started . My T is so reactive to sounds that I cannot travel on train or bus and being in car pushes up my T , even with ear defenders. Even going in shops is impossible without ear defenders ( because of the music) and I cannot possibly be in a workplace situation So i would say I am at the extreme, rare end of the T spectrum with this reactive constantly loud tinnitus
I have some of same symptoms/ issues as yourself as shown in my response below
Vertigo "sudden or up and down movement make it worse" - I have this as well, but only effects my left side
"had a MRI scan which hasn't shown anything" - this is same for me.
"I score severe on the Tinnitus Handicap Inventory (THI)" - this applies to me as well , as I have constant severe loud tinnitus (left side mostly) which i hear all day, every day
"pretty much no sound can mask it" - me too
"Unless my Tinnitus has finally, after several years taken it toll on my brain and sending me around the twist" - i feel this is happening to me as wll
i have hyperacusis and insomnia as well
I have developed Eustachian tube issues (left side) and I think my vertigo episodes are related to the main Auditory nerve on my left side. My T is most likely Neurological as well as hearing loss ( and also possibly related to issues with neck vertebrae?)
I am at end of my tether as i have tried hearing aids n sound therapy and made the T worse. I hv never taken any meds but i am in this severe state
?? Does yr T react to everyday sounds - TV, Traffic, Car travel , shops etc etc? Does sound therapy help yr T?
Thank you for you reply. Sorry you're going through this I'm awaiting results from an EEG scan I had last week. I'm not expecting answers but it's a step forward. I reduced my Sertraline to 50mg recently, but I quickly increased again to 150mg . I struggle to tolerate my T and episodes without meds.
My Tinnitus will react to most sounds and I frequently struggle with TV. Road noise is very irritating. I just try my best everyday to accept it, but it's draining.
Depending on the results of my EEG my symptoms all seem to shout Ménières Disease.
Wishing you the very best and thank you for your response.
I went to two neurologist and the second one said I had FND but I had the kind that does not last forever. He said that because when I walked toe to toe in the hallway and I lost balance I could move one leg or the other from side to side and catch myself from falling down. For your vertigo i would ask someone about POTS. I also have terrible tinnitis but can't find anyone to help me. Good luck to all of us.
It must be so difficult to diagnose. The symptoms are so common across a spectrum of disorders, FND to Ménières, Diabetes to, well brain conditions and the so-called Male Menopause.Things that could be missed in an MRI, CT or EEG.
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