How long did you try CBD oil for and did it help or not? Wondering whether to try this next. Have you come across anyone who has tried somatic trauma therapy and did it help? Triggers are of course when the symptoms flare up and that whole circle but definitely when there is lack of sleep, poor quality sleep, stress, negative emotions such as sadness, frustration, irritation (which are usually a reaction to the symptoms or stress) and at other times it is random. When symptoms flare up it’s like if you allow yourself to be even a bit sad or irritated it makes it so much worse so what’s left when flared up is quickly trying to move to distraction or slowed breathing without thinking at all- prior telling one to not think at all during a tic attack and to take time to think when symptoms improve. Symptoms are everyday but vary in intensity. When it flares up - severe motor and vocal tics, heavy feeling in head, temporarily feeling clumsy or as if drunk with large motor skills. Use to be hyperventilating but that’s better now with slowed breathing. Used to be a very wide based gait for a couple months but that’s gone when my son started getting better. Our best strategy so far if it’s not terribly flared up is distraction (whether it’s a game, comedian on utube etc) and frequent periods of meditation/slowed breathing while laying down. The slower breathing can stop the tic attack but if it’s flared up badly it can just keep flaring up every time you stop meditating. So you spend many days stopping and focusing on breathing. If not, and you let it just get worse, it gets really bad. If it gets really bad it causes days of fatigue. On a low dosage tricyclic antidepressant and low dosage quetiapine. After about 6 months on the 2 meds that seemed helpful (first 2 meds tried were not) and lots of meditation and healthy stuff it mostly was gone. Reduced meds slowly and worked part time. Had 6 pretty good weeks. Was almost off meds which maybe was a mistake. Had tapered pretty slowly because everyone knows how badly that can go without tapering slowly. Work concentration and some work stress triggered it again and it came back intensely. Maybe after you’ve had this it’s like a trip wire that trips more easily by stress. The shock and irritation of it coming back made it much worse and intense. Wish we had known to expect that it might come back and then would have been ready to go straight to slowed breathing and not have an evening of despair which may have made it much worse as then symptoms were flared badly for days. So increased meds again and have been working at everything again for last 2.5 months with it being up and down rather than consistent progress. I think it is great that you do these videos as many people are embarrassed by their symptoms. My family member is! A broken brain programming system is no different than a broken back. The body is broken. It’s not the person’s fault. It’s affected by stress, anxiety, fatigue but yet even if there are better days and lots of laughter it doesn’t magically go away. You could suddenly have a bad day. There doesn’t seem to be straight forward answers on getting better or people would be better. Everyone is definitely trying everything they can think of to be healthy and positive. It’s not from lack of effort in trying to get better. Have had this for 14 months so far with tics/motor movements and possibly 17 months if I consider other things like the rare stutter or choking now and then. Did try a benzo initially when it first started which reduced symptoms but started to get tolerance and when it wore off symptoms were even worse so I agree that a benzo doesn’t seem to be that helpful. Went up to 1 mg Clonanzepam a day. It started reducing the symptoms for less amount of time in the day and as it wore off symptoms were getting worse over time. Did try an SSRI briefly (3days only) but it seemed to cause insomnia (3 days without any sleep) which made symptoms worse. Mirtazapine did seem to help with sleep. Wondering about CBD oil. Worth trying or will there become tolerance and dependence and then almost worse symptoms like the benzo? It’s trial and error but hopefully as more docs realize how debilitating it can be that there will be more research in this area. Just a note-Have had allergies since about grade 3 and at certain times of the year, mild asthma - triggers for smoke, cats, mold, grasses, chlorine in pools. Cheap metal snaps cause a skin rash. Can’t use scented products like laundry soap etc or get a rash. Otherwise reasonably healthy. Mid twenties now. I wonder a bit about an autoimmune component to FND but don’t know. It’s not like I see a direct link. Has symptoms also when allergies and asthma are absent. Keep up the good work inspiring others to talk about this and advocate for research and answers. When the software in your computer goes down, you fix it. You don’t tell your computer just to work harder at getting better.
He put dizziness down to hyperventilating? One of my main symptoms is dizziness. Although I do also have chronic anemia. So it could be a symptom of either fnd or anemia I suppose.
@@jackkilby6012 yeh I've seen it's very common. I think it's why I went undiagnosed for so long as it kept being attributed to my anemia. Was it worth seeing the 2nd neurologist?
Lauren Watson it was reassuring for me because there was some white matter on my mri so I was concerned it could show something in future but he dismissed any possibility.
Lauren Watson Give your GP a call, they may have the radiologist report. It won’t necessarily give you a diagnosis but you’ll know if they found anything
Come back Jack !! Give us a update 🔥🔥🔥🔥🙏🙏🙏🙏
Hey Jack. I’ve been watching your videos. Hope you’re doing well.
How long did you try CBD oil for and did it help or not? Wondering whether to try this next.
Have you come across anyone who has tried somatic trauma therapy and did it help?
Triggers are of course when the symptoms flare up and that whole circle but definitely when there is lack of sleep, poor quality sleep, stress, negative emotions such as sadness, frustration, irritation (which are usually a reaction to the symptoms or stress) and at other times it is random.
When symptoms flare up it’s like if you allow yourself to be even a bit sad or irritated it makes it so much worse so what’s left when flared up is quickly trying to move to distraction or slowed breathing without thinking at all- prior telling one to not think at all during a tic attack and to take time to think when symptoms improve.
Symptoms are everyday but vary in intensity. When it flares up - severe motor and vocal tics, heavy feeling in head, temporarily feeling clumsy or as if drunk with large motor skills. Use to be hyperventilating but that’s better now with slowed breathing. Used to be a very wide based gait for a couple months but that’s gone when my son started getting better.
Our best strategy so far if it’s not terribly flared up is distraction (whether it’s a game, comedian on utube etc) and frequent periods of meditation/slowed breathing while laying down. The slower breathing can stop the tic attack but if it’s flared up badly it can just keep flaring up every time you stop meditating. So you spend many days stopping and focusing on breathing. If not, and you let it just get worse, it gets really bad. If it gets really bad it causes days of fatigue. On a low dosage tricyclic antidepressant and low dosage quetiapine. After about 6 months on the 2 meds that seemed helpful (first 2 meds tried were not) and lots of meditation and healthy stuff it mostly was gone. Reduced meds slowly and worked part time. Had 6 pretty good weeks. Was almost off meds which maybe was a mistake. Had tapered pretty slowly because everyone knows how badly that can go without tapering slowly. Work concentration and some work stress triggered it again and it came back intensely. Maybe after you’ve had this it’s like a trip wire that trips more easily by stress. The shock and irritation of it coming back made it much worse and intense. Wish we had known to expect that it might come back and then would have been ready to go straight to slowed breathing and not have an evening of despair which may have made it much worse as then symptoms were flared badly for days. So increased meds again and have been working at everything again for last 2.5 months with it being up and down rather than consistent progress.
I think it is great that you do these videos as many people are embarrassed by their symptoms. My family member is! A broken brain programming system is no different than a broken back. The body is broken. It’s not the person’s fault. It’s affected by stress, anxiety, fatigue but yet even if there are better days and lots of laughter it doesn’t magically go away. You could suddenly have a bad day. There doesn’t seem to be straight forward answers on getting better or people would be better. Everyone is definitely trying everything they can think of to be healthy and positive. It’s not from lack of effort in trying to get better. Have had this for 14 months so far with tics/motor movements and possibly 17 months if I consider other things like the rare stutter or choking now and then.
Did try a benzo initially when it first started which reduced symptoms but started to get tolerance and when it wore off symptoms were even worse so I agree that a benzo doesn’t seem to be that helpful. Went up to 1 mg Clonanzepam a day. It started reducing the symptoms for less amount of time in the day and as it wore off symptoms were getting worse over time. Did try an SSRI briefly (3days only) but it seemed to cause insomnia (3 days without any sleep) which made symptoms worse. Mirtazapine did seem to help with sleep. Wondering about CBD oil. Worth trying or will there become tolerance and dependence and then almost worse symptoms like the benzo? It’s trial and error but hopefully as more docs realize how debilitating it can be that there will be more research in this area.
Just a note-Have had allergies since about grade 3 and at certain times of the year, mild asthma - triggers for smoke, cats, mold, grasses, chlorine in pools. Cheap metal snaps cause a skin rash. Can’t use scented products like laundry soap etc or get a rash. Otherwise reasonably healthy. Mid twenties now. I wonder a bit about an autoimmune component to FND but don’t know. It’s not like I see a direct link. Has symptoms also when allergies and asthma are absent.
Keep up the good work inspiring others to talk about this and advocate for research and answers. When the software in your computer goes down, you fix it. You don’t tell your computer just to work harder at getting better.
He put dizziness down to hyperventilating? One of my main symptoms is dizziness. Although I do also have chronic anemia. So it could be a symptom of either fnd or anemia I suppose.
Not entirely down to that, but in part. Dizziness/vertigo is a very common symptom of FND.
@@jackkilby6012 yeh I've seen it's very common. I think it's why I went undiagnosed for so long as it kept being attributed to my anemia. Was it worth seeing the 2nd neurologist?
Lauren Watson it was reassuring for me because there was some white matter on my mri so I was concerned it could show something in future but he dismissed any possibility.
I'm still waiting on my MRI results x
Lauren Watson Give your GP a call, they may have the radiologist report. It won’t necessarily give you a diagnosis but you’ll know if they found anything