Forgive my break from formality. Today, I just need to open up.
Disability insurance will not cover FND as a viable claim for medical disability/Leave of absence. I need that coverage to protect me on days this condition drives me into bed or leaves me unable to form a clear sentence. It permits me to go to doctors’ appointments when needed and ensures I have a job to come back to. Without that coverage it simply means I can miss no more time at work. I MUST work with this, no matter what happens. My boss is supportive and sympathetic, which has been my saving grace, thankfully. I feel like I’m taking advantage of that generosity sometimes, but that thought only occurs in the moments between the seizures. It is the work ethic in me gnawing at me to get back to task. I am very good at my job, but must admit this condition can trip me up. Lucky for me my boss has permitted me to work from home.
Nobody in the nearby medical community wants to touch whatever this is that I am now. Everyone that sees me tells me FND is not their field (I’m keenly aware and need no reminders) that I am alone here. My family stands by me, but they are hardly able to do more than I am, and it leaves me with a very supportive but lost cheering section.
Gaslighting, even among the few specialists in my region that are supposed to treat FND, is real. Well... gaslight this! I am having myoclonic and focal seizures. Sometimes hundreds a day, every single day. I am usually fully lucid when they are going on, and I try to keep working through them because they happen all the time. If I stopped every time I had one, I’d never get anything done. Does anyone else suffer with epilepsy like this?
The seizures have been going on like this for about 10 months now, but everyone blanketed all things under FND and walked away. I was given a list of hypnotherapy, yoga, diet, and wishful thinking to "fix" this. I did try a few medications, but they made it all worse, so they were quickly stopped. Have the changes recommended calmed any part of this condition? Yes. I've seen some improvements in the general anxiety this all causes, and the full lower limb dystonia is much less frequent, and for that I am thankful, but beyond that it has changed nothing else.
If FND isn't enough to gain help and protection at my job, then perhaps epilepsy of this degree, will. I am not a doctor, yet I find now I must be. I spend much of my free time researching these motions, watching videos, seminars, and personal documentary style videos. I must learn about this. I grasp to find others suffering as I am to find the common threads. These are things I always foolishly assumed doctors would do for you. Not so. Doctors in a condition like this, or at least in my experience, are isolated on little islands of their own practice/specialty. These islands are rarely interconnected with each other. Very few seem to even try to speak to other islands to gain the wealth of their knowledge combined. It leaves me wondering after almost every visit... am I doing something wrong? How many seizures do I need to have? How many changes must I accept about me as normal? How many times do I need to hurt myself today before its important to someone?
I stopped seeing my local neurologist when I was referred to the University of Texas last March. It took months to be seen. I was sure this would be where I would find my answers. These were the best minds in the field within 600 miles. I have to admit that I placed all of my eggs in that basket, because I had no other baskets left. The day finally arrived. It was a very long drive that required my husband to also take a few days off of work to accommodate. We both went into it full of hope. In less than 1 hour, after months of suffering and waiting to be seen, I was dismissed. I was given a link to neurosymptoms.org and told to read it. If I still have problems in 6 months, let them know, but that I need to do yoga and take hypnotherapy seriously. Even more upsetting was the doctors 1st statement made to me. "If you don't believe what I am going to tell you and don't trust that its correct, you will never get better". I struggled for days with that statement, but ultimately decided to trust, implicitly. What choice do you have? It took months to get in to see him. I wasted all of my time off stuck in tormented loops of dystonia and seizures, just waiting for the appointment. He wouldn’t even fill out my disability paperwork. I went from a powerful business woman to a completely reclusive shut in in less than 2 months. I hardly drive at all anymore because I don't trust myself, and I can't risk losing my drivers license right now. I'm trapped in my own brain, and the only help I really got basically told me the only way out it to just, not be in it anymore. Awesome... I'll get right on that. I'm sure I left the map to the emergency exit in my brain somewhere around here.
Do I think FND was the wrong diagnosis? No. I think it was correct, but I also think there is either something more going on under the FND that we simply haven't given a name, or the FND is progressive, and nobody is addressing that. It shouldn't be progressive. By definition, that’s not how FND really works so we are missing something. Really all I know for sure is I’m allergic to phenobarbital, and anything containing dopamine magnifies this condition 10 fold.
I am now working to get back in to see my local primary neurologist. While unable to help with FND, and largely out of his comfort zone where I am concerned (stated as such by him directly) he is still the most willing of all my doctors to keep looking and keep trying. Every set back scares him for a bit and I found that I must let him decompress before he's willing to try something else. He's very worried about doing something that makes this worse. The brain is a funny place and he understands the real consequences of neurological mismanagement. Still... he is the only one that consistently takes my calls and leaves me with the thought that he's paying attention, and really wants to help. Every time I see him, he comes in with an armload of books and papers he's found and been studying, to try to learn more about this part of neuroscience. He is willing to learn, and at this stage, it is the best hope I've had for help.
How do you measure recovery when what you have lost can't be restored?
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Gud4Ewe
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Gud4Ewe, this is so profound. I am struck by how much you (we?) have been left to navigate. Like you, I feel there is more going on. Undiscovered rather than unexplained disease.
I have also had exactly the same experience of pinning so much hope on one appointment. Never again.
I love the sound of your local neuro and the image of him with his learning and his books and papers.
Your post reminded me of this, I read it on another forum and it stayed with me. Hope you like it too.
"A small city had 10 roads. 5 had a name and 5 did not.
Whenever someone went on a road with a name he could easily say the name of the road, but whenever someone went on one of the roads without a name, he could not say where he was.
This was a very inconvenient situation, so it was decided that all the roads without a name will be from now on called unnamed roads.
So, now it was much easier. when people asked each other were they were, they would answer-I was in an unnamed road.
It very rarely happened that people would miss the name of the road and mistakenly say that they were in an unnamed road.
saying you were in an unnamed road gave very little information as to where you really were. As opposed to named roads which meant a specific road. an unnamed road could be almost anywhere.
Still, it made everyone feel better that they could say they were somewhere.
They were no longer concerned in putting those roads on the map, giving directions or trying to give them a specific name.
Until one day one of the people said it's not nice to say unnamed road, let's call it happy roads instead. Everyone thought this was an excellent idea. So, from now on when they went on a road without a specific name they would say they were in a happy road. And all the people living in the city were very happy.
I personally think that it would be much better if people would say that they don't know where they were. No doubt that it would be less convenient initially, but possibly it would eventually lead to making better maps and giving all the roads a name. But, who am I to say."
I am so sorry. I know how this is all too well. I wish I had the time for a really detailed reply, but I don't at the moment.
After suffering with a lot of the symptoms that you have for over 5 months, I found out my Vitamin D was critically low. My Vitamin B12 was low as well, but at the time that this was discovered, my vitamin D hadn't been checked. My nuerologist was adamant that all my symptoms couldn't be from just B12. After he found out about the Vitamin D as well, he said it could have been contributing to most of my issues with muscle weakness and such. Since my B12 and Vitamin D have started to become regulated, I feel SO MUCH better! Yeah, I do still get those seizures that you talk about, but not nearly as much. I think my vitamin deficiencies were kicking off the FND.
I'm on gabapentin already for migraines, so my neurologist didn't want to throw anything else in the mix. I don't know if this is an option where you live, but I strongly recommend medical marijuana if it is available. I am a software quality assurance analyst, so my job involves a lot of thinking, which is exhausting. I found with a vape pen of 4 parts CBD to 1 part THC I am mostly functional for work. Because of the high CBD vs THC, there is no "high" from using it mentally. But it really helps to control the muscle spasms and neurological symptoms. I have had to give up my desk at the office and switch to becoming a permanent remote employee. And sometimes what used to take me 8 hours can take much longer on a bad day. But I am very grateful to be able to still have my job. I really hope you can find something to help. I know that hopeless feeling. I've been there.
I forgot one more important thing that has been crucial to this. I listen to binaural beats all day while working. I usually have music playing over it, so that I don't consciously have to hear that tone all day. But it helps when I have those tiny seizures. After them, I can forget what I was doing before they started. Having the beats playing in the background has allowed me to "resync" much faster - and remember the last thing that I was working on. I'm really reliant on the sounds, that is the only downfall. As I progress, I'm hoping maybe I won't have to be.
I will have to try the beats. As for nutrition, outside of this I had massive gastric surgery about 5 years ago. My nutrition levels are very closely monitored all the time. I have no deficiencies of any kind. That is the 1st thing we look at every visit because it can change quickly. I have not suffered any deficient fluctuations in over 4 years, thankfully. Thank you for taking the time to share some of your experience. Its nice to know there are others who face the same things. I too work in IT in a very stressful key role. I am now fully remote as well. I had to give up a lot of things to ensure I remain on task and safe. Staying employed is top priority.
Sadly, it sounds like we may be going through very similar roles. I'm glad that your levels are checked often, and have been staying consistent. I'm just now discovering these malabsorption issues, but at least I feel like we're getting closer to the right direction now. This journey can be so long, and frustrating.
Staying employed is my top priority too. I'm the breadwinner so I have to be. I try not to stress about that too much, but it can be tough.
I know FND isn't covered for disability, but maybe there is another co-condition or symptoms that are? For example, I suffer from peripheral neuropathy as a result of the vitamin deficiencies/FND. Is there another term for "seizures that aren't epilepsy but are still debilitating" that disability would cover? Sometimes it's just an issue of getting creative with the paperwork. I wouldn't give up on it quite yet.
Exactly, and I'm not giving up. I had to take the plan of action seriously, and give it full effort until I could be sure I've hit its limits. That is actually now my new thought process. They may not cover FND, but surely they cover this type of disruptive seizure activity. I just need them to grant me some time, to get seen and get a new plan to tackle this put into place. My Neurologist may be more comfortable with this if he only has to look at the direct interruption and not the condition as a whole.
My neurologist definitely has been more comfortable in looking at the direct interruption vs the condition. It's been strange, but the best way to get treatment has been to do that. I also did 2 months of OT 3 times a week. And while expensive, it helped a lot. My OT told me about metronomes helping kids with seizure disorders. That's what gave me the idea to look at the binaural beats. I also found a really good meditation that has helped me to get me brain to "reset" faster after an episode. Here's the link for the meditation. I had to do this everyday for a week or so before I saw really positive effects.
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