This really terrifies me because the jaw locks, often in an open position, and the tongue thrusts outwards. I am completely unable to speak during these episodes, so if I need to call for help, I wouldn't be able to because my mouth wouldn't move!
Any tips on dealing with this? It lasts for hours for me.
Hi,Our daughter who was diagnosed with FND 2 years ago had the same issue and over time it went away the only thing with this debilitating illness , symptons come and go. Rest and no stress appears to assist on going issues
Thank you. Did the doctor suggest anything that she could do to help with the symptoms?
I really feel for you and can understand why this would feel terrifying. Can you rig up an alarm button you can press to call for help when this happens? If you know help is coming it might help your system relax so you can then breathe through the attack which could reduce the severity of it. Has your consultant suggested anything you can do when this happens?
Hi, I don't currently have an alarm. How can I obtain one? I live alone so having these symptoms is terrifying.
Not sure where you are based but in Australia there are systems like personal alarms (press button, can set alert to contact health services or family member/friend alert) or not sure if the National Relay Service could help as well. Maybe you could save a sms message to draft so you can use in case of crisis.
I'm in London in the UK
Hello my friend,
This may sound like a dumb question. Have you been tested for tetanus? I have never heard of a locked jaw for FND. Granted, symptoms for any neurological disorder can be anything.
Reason I ask, tetanus is the most common disease that causes lock jaw.
Things you could do... I have no idea.. others have said maybe something to hold it in place.. But outside of that or duct tape. I have no clue. I would strongly suggest talking to your Dr to help relieve that problem.
I'm sorry to hear about your symptoms my friend.. Again, make sure you have been tested for tetanus.
Best,
Matt
Hello, thank you for your reply. Yes, the neurologist confirmed it's FND.
Oh good, glad to hear it isn't tetanus.. I'm sorry to hear about your lock jaw though...
I would reach out to your Neurologist and ask for suggestions. That sound really scary. Hugs and support from Utah
This happens to me also. Whenever I have a dissociative seizure, not really anymore but when I would come to from the seizure, my whole body would become paralyzed and my jaw would lock so would my tongue and my throat would become numb so I couldn't swallow or talk or move my mouth at all or even my body and sometimes my mouth would be opened or my teeth would be tightly sealed together. So I completely understand and it would scare me all the time and actually make me cry because I was upset that I couldn't control what was happening especially with my loved ones around and being as confused as me. Nothing really helped me when that happened, I just had to wait it out and basically not panic or be frustrated about it and just wait till it passed even if it lasted for a few hours with me like it does you. So my advice is wait for it to pass, don't force yourself to do anything like talk or swallow or move your jaw until it loosens up. Be patient and understanding with yourself and if your loved ones or family freak out or try to talk to you just wait to tell them after your jaw is loosened up. You aren't alone. Symptoms will come and go and change you just have to be patient with yourself and not blame yourself. I haven't heard anybody have this happen to them so it's nice to hear that somebody experiences it also. I am sorry to hear that this happens to you. It will pass. Best wishes. Hopefully hear from you soon.
Thank you for your reply. I'm finding it so tough to live with this because I live alone and it's hard to reach out to anyone for help when I have them as I can't speak at all. Sorry to hear you went through this as well. It's so terrifying.
Of course Id love to help somehow and show you aren't alone. I'm sorry you go through it and can't ask for help that easily, that is terrifying. But you can get through it and you are stronger than your symptoms.
Hi, sorry your having such horrid symptoms. I’m in the uk and I have a Buddi alarm. I suffer with blackouts and falling over backwards. I also live alone and my buddi is invaluable. Google it. 😊
Hi I do not have your version of FND, only Motor FND i.e mainly limbs uncoordinated. However, I know of someone with a similar jaw/tongue issue who also has FND.
What they found helped was a corrective `bite plate' in their mouth, it changes the tensions on the jaw as it is being held slightly differently and gives the brain some really positive nerve feedback. They also tried acupuncture which helped for a short period after treatments. In your case, I would also just get your neck/spine checked out to see if any nerve compression is occurring in certain positions to trigger these attacks (the body is a funny thing; if it cannot compensate for bad posture it can go a little random in response).
As for calling for help - it might be an idea to record a spoken general help message on your phone, then at least you have something to play back to call for help in an emergency and do not forget blind and mute people must have some special adaptive apps on their phones too, which you might be able to tap into as well?
During the attack- stay as calm as you can, breath as normal as you can and reassure yourself that it does pass and everything returns to normal - that is the best I can suggest without you going down a Cognitive Behaviour Therapy or Speech Therapy route.
Look for the Calm in the Storm!
I get lock jaw also and what I find helps me is warm/cold compresses and massaging area at joint. First time this happened to me was the day before Thanksgiving! Lol I use either warm/cool compresses and massage the area. I see a chiropractor regularly for my neck so I'm not quite sure if the lock jaw stems from my neck issues. You are not alone in this 😀
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