AND has same triggers as Epilepsy

[Moses4]

Our son has FND and his triggers are as follows 1. Sick with a flu virus or infection such as strep - Triggers a NES

2. Does not get adequate sleep or over tired -Triggers NES

3. Overheated or to much sun - Triggers NES

4. Physical overexcertion - Triggers NES

5. Does not eat when hungry (skipping a meal or needing a snack) - Triggers a NES

6. Stress such as a hard days work, exams,test, getting upset or worried-Triggers NES

Now, look up symptoms of epilepsy or anyone with Parkinsons,multiple sclerosis or other diseases that triggers seizures involving electrical discharges in brain, their triggers are pretty much the same as ours. But yet they say ours are psycogenic. I loathe that word. I can accept NES but to say the P word is hurtful and offensive and I tell my son's doctors to not say that because it stigmatizes someone and prevents them from getting the help they need. I also tell them that it is not a proven accurate finding or official diagnosis, it is just a assumption because they really do not know what causes it. I also state that they thought the same thing years ago when people were put in assylums because of seizures and when the CT machine was invented and started doing scans and saw lesions in people's brains then they treated them and it helped. Maybe they have not found out with FND also.so nobody knows still what are the causes. I still think there is genetic mutations or a past infection, high fever from sometime ago, definitely vaccines that have affected sensitive individual's or a bad call or injury from the past that was not checked, maybe drugs from the past anything that caused the brain to start functioning abnormally to a host of other things. But just to say it's psychological , there is no prove in that. With all my heart i do not believe that's the cause. People with non factory eplipsy also have to see psychiatrist to manage their triggers just like us. So any comments i would love to see.😁 Thanks

[Mic67]

Hi and I am so sorry you and your family are going through this. As you will see there are many of us here who feel the same as you and are also questioning some of the assumptions behind the diagnosis.

[lily82]

Has your son been tested for NMDAr antibodies?

Or an investigation into him having PANS/ PANDAS? Because being triggered by strep or any illness rings alarm bells.

My seizures and other symptoms were misdiagnosed as FND (and I had the same triggers as your son) but I've now been properly diagnosed with NMDAr encephalitis. I have an autoimmune reaction to strep which attacks my brain and causes seizures etc.

[Moses4 in reply to lily82]

No , I have even asked for genetic testing because I have a autoimmune disease and my sister did to. Lupus complications took her away. We had him tested ANA but said it was negative from last year. I asked for them to look at others things not just the brain but the body as a whole. I asked what about POTS, brain function problems but they just do the same thing, MRI and not investigate others possibilities. As I am sure they do a lot of us on here. All we can do is keeping hoping and praying that scientific community will keep studying and research will continue and funding will increase.

[lily82 in reply to Moses4]

Oh no! So many people with autoimmune brain condition, have a family history of autoimmune conditions. That's crazy that they won't investigate further.

The fact he gets worse after strep throat rings alarm bells. Are you able to change doctors? Get him to a PANS/ PANDAS specialist?

You can get him tested for NMDAr privately. Ether blood test or lumbar puncture.

[thinkin]

Hi,

It's certainly not psychogenic this has been refuted, but like most things medical it takes time to change - yes, it's printed in a big book on neurology that it is "psychogenic" or "conversion disorder" but that doesn't make it so. The fMRI has come along and driven a large hole in their assumptions.

It takes time to change things in the medical world. It would ok if this type of labelling helped, but as you may have realised it makes things worse. The FND umbrella term is relatively new and describes best what is actually happening. It is in it's infancy. People still quote Freud but his work has been refuted and discredited, but people stick to what they know. Frustrating.

FND's usually start due to an injury, episode of inflammation, infection. The mechanism isn't known fully but the blood brain barrier does tighten up in these circumstances. It's why anyone feels ill when they are ill, but it's the brain protecting itself. Some people it is unknown what triggered it and yes, some start after an abusive episode.

Have you had a browse around neurosymptoms.org and the FND Hope websites. They are finding ways to help with what are now termed as non-epileptic seizures. I think Jon Stone at Edinburgh has done the most research in the UK. Certainly keep looking. You are not alone. xx

[Moses4]

Thank you , our son started March last year and is now 15 getting ready to turn 16 and is homebound. I asked his neurologist to do a FMRI but he never agreed to do it. He does have a psychiatrist that is going to a specific test , which he will have Caleb hooked to a EKG and have him perform different tasks such as how his responses are to certain movies,walking on a tread mill and other task which will show how the brain functions. So if he has a seizure ,they will know his triggers and also do CBT with brain mapping. I think we finally found someone who knows more about this than these supposed best neurologist in America. (We know from last experiences the most neurologist have futile assumptions on the particular disorder) but Caleb's psychiatrist is a blessing and took a good while to find someone. He is doing studies on this rare disorder.we have had many medical doctors and medical assistant so rude to us since neurologist would claim their psycogenic to the staff when he was admitted and judged us as being less valuable and a nuisance or so called faking. Now that really hurt emotionally , the doctor told Caleb and I that the next time he has one walk away and tell Caleb when he is finished having his fit he can come and join us, he then turned around and walked out of the room. We were astonished and hurt. I will tell you the next time we have a experience like that , I will go directly to the head person in the hospital ,report the doctor and the medical staff on that floor, but let them know it just to embrassas them in front of other patients and tell them you took a oath in medical school to do no harm pysically,emotionally and mentally to patients.it does not matter their own personal feelings peroid. Then report them to the head medical board, that's the only way to fight for ourselves and others who suffer daily with this disorder that impacts our quality of life. As Elton John says In his song "I'M STILL STANDING". Anyway sorry for sounding off, but hopefully others will read this and see that they can hold these types of people accountable for their actions because it can cause us to suffer injury, psyical injury from falls. I have heard numerous stories of people getting seriously injured. One guy from a screwdriver from a seizure he had and when he fell,he fell into the screwdriver and it went into his head, luckily it did not kill him but he now wears a helmet to protect himself from injury. The medical community needs to take this seriously.Will stop for now , but keep fighting for yourself and each other.hugs everyone😁💜