My husband was diagnosed with FND in 2020, and has recently begun to experience intense dizziness. It started out as a moderate symptom that would come and go. Now he is dizzy nearly all the time, often with high intensity.
My question for those with FND and their families: what solutions can you share that have helped to control dizziness?
Many thanks in advance for sharing your experiences -
Could it be menieres or vertigo speak to the G.P. As it doesn’t always have to be to do with the FND but it still might be.
Hi. My son started to experience this together with that "falling feeling" (often associated with anxiety). That was my guess "sub conscious anxiety" - as anxiety quiz result was 17%, normal. It turned out to be a combination of blocked sinuses following a cold and "air pressure" two flights.
If you look at my last post, another member mentioned a condition that it could of been noticed on the FND Hope forum advanced symptoms discussion. I asked if they could share the link as I struggled to find much following an internet search.
Hello! Having struggled with intense dizziness, a long with severe vertigo and POTS with my FND, I have a few small things that might help! Of course always check with your doctor, as it can be very easy when dealing with a chronic condition, to dismiss new symptoms as something related to the chronic condition, instead of something possible different.
With that being said, the things that help me, are things you can try out while you investigate what's happening!
Season is also changing, so the air pressure and allergies can effect the body in strange ways, so keeping track of when it's the worst, and if anything seems to make it worse is helpful!
I use a cane for balance and keeping myself from falling over, but other smaller things that can help, is when preparing for dinner/cooking, sit down during these activities so your not trying to fight the dizziness and amplify it.
Also when doing most things, it's a lot easier to feel more in control and not so swaying, when sitting.
Compression socks (minimum at knee height) are such a game changer! You'd want at least 20-30mmhg at least, or even 30-40mmhg if the dizziness is really horrible.
With the misfiring of the communication from the brain the the body, you want to make sure your not moving suddenly, take your time sitting to standing, and go slower when picking things up and walking.
Also increase your fluids, you might think your getting enough water, but divide your weight by 2 and that's the daily ones you should be having!
On that note, liquid IV is really helpful in keeping up the body's electrolytes to help combat the dizziness, and good breathing exercises. A trick to see how your breathing is, get a inexpensive harmonica and hold it in your mouth when you do the breathing exercises, it'll help show you if you need to work on that, or if right now you're not getting the breathes as deep as you thought!
Hope this helps and good luck!
FND-wife,
You/your husband will need to establish the cause of the motion sensations before treating it since there is no 'one size fits all' with balance conditions. They are often misdiagnosed initially (especially by GPs who tend to reach for common conditions as a result of their training) so it may take a while but please persist until you know the cause. Telemedicine is your friend and I can recommend Prof Mo Hamid who is the founder of the Audio Vestibular Medicine International Board. He is a great doctor and a gifted healer.
I do not think that balance/motion sensations conditions should be lumped under FND since most people with them would not meet the criteria for a DSM dx.
hello FND-wife.
Firstly, I applaud you for proactively looking for answers to benefit your husband. Not all folks with FND have supportive families.
Secondly, I experience intermittent bouts of dizziness and vertigo at times. Fortunately not constantly. I was referred by my neurologist to PT with a therapist well trained in neurological, motor, balance, and vestibular issues. Thankfully this therapist is well versed in neurological, balance, vestibular, and motor disfunctions. She knows about FND. That seems to be rare.
She was very helpful. I still have dizziness and vertigo episodes. However, the symptoms are reduced.
** This is what has helped me:
- minimize sudden head movements use my trunk to turn; not just head swiveling
- move slowly when changing from vertical to horizontal positions; also I use a lot of deep knee bends when picking up stuff from the floor. If dizzy, sometimes I spit my toothpaste into a little bathroom cup instead of leaning over the sink using head movements
- listen to my internal warnings and auras. For me it is a tingling along the back of my neck and/or ears sensing a humming tone inside my head.
- stop before symptoms appear. At the first hint of dizziness, I stop whatever I am doing and rest immediately. Even if in the middle of something.
- if I wake dizzy, I move as slowly as possible. I use my eyes as little as possible. I sit in a comfortable chair and stay still.
Stay as calm as possible. Try to focus on slow breathing, slow movements, eyes closed as much as possible. For me, becoming irritated, angry, upset, that I must stop everything, makes the episodes worse.
- Progressive Muscle Relaxation helps. On my phone, I have a few Apps for calming and deep relaxing.
IF you have access to a large hospital, such as Mayo Clinic, Mass General, Johns Hopkins, ask if they have outpatient physical therapy that focuses on neurology, not the typical hip and knee replacement, or ACL injuries, etc. I am very fortunate. My PT person is only about 50 min away. My husband took off work a couple hours early each appointment to take me there. He has FMLA leave. Therapy lasted 3 months.
I hope you can glean something from this litany for your husband. Perhaps even virtual PT could help if that is all available.
Best wishes — Henrietta Poultryfoot
Hi
So sorry to hear your husband has started having new symptoms. I have had osteo and acupuncture that has helped enormously as well as the acupuncture helping my non epileptic seizures that came alongside my FND.
warm wishes
Jen x
Have a look into PPPD - persistent perceptual postural dizziness which is a chronic functional vestibular disorder which I have diagnosed as part of my FND.It's not a spinning vertigo but a sense of dizziness and light-headedness. There are a few online facebook groups which have helpful hints and explain how worry about the initial dizzy episodes fuel further dizziness which the brain then sets as a blueprint.
Rock Steady by Joey Remeni is a brilliant book with lots of solutions.
It's hard but the balance centre of the brain need to be retrained which can only happen by it receiving vestibular feedback from new environments. Staying at home still can't ever gain that alternative/additional feedback to tap into the brain's neuroplasticity. I bought a wheeled walker to help support me initially just to get out. It was so difficult. I still get extremely dizzy especially standing still and in busy visual environments but I have developed my own grounding technique when I feel unsteady of distracting my brain to find everything red in my immediate environment, then pick another colour.
Keep moving is the key however hard it may seem x
Hi FND-wife,
Important here to get the symptom correctly described, or you'll end up down rabbit holes getting nowhere.
The dizziness: Is it genuine dizzy as in room going round & round or is it a feeling of 'off-balance', going to fall over, even when laying down? REALLY important when describing to GP!
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