Functional Neurological disorder next steps

Posted by rattlesnake @rattlesnake, Jan 4 6:03pm

I was diagnosed with FND after a years long search to explain my physical issues. Constant headaches and misery to the point of having to see a psychiatrist to want to stay alive. Prescribed Duloxetine, made huge improvement.

Now, 2 years later with quality of life 'adjusted', it is still unacceptable. Life is a still a continuous hangover.
Looking for help to restart my quest for improved QoL or coping. 46 yo male.

Timeline Summary;
2019 - started to always feel 'sick'. Fatigue, headaches. Bloodwork fine, improved my diet, started exercising.
2020 - got braces that set off jaw and face muscles. Life unbearable. Extreme migraines. Went down jaw/face/headache path, no treatments/medications effective. Had many MRIs, scans and tests of all kinds. No issues found. Eyes, ears, brain, spine, neck, etc.
2021 - Started having neck spasms. Went to Barrow for HA. No medication effective. More scan, tests. Diagnosed with FND by Barrow movement disorder. Started counseling.
2022 - Psychiatrist say stress/depression/anxiety, Duloxetine worked, tried many doses and combos. HAs mostly gone. Rest of symptoms remain. 80% improvement in QoL.
2023 - Tried more supplemental medications. Bupropion helps spasms some. Severe Fatigue, Modafinil helps
2024 - well here we are...

Symptom summary:
HeadAches (HA)
Nausea/dizziness
Chronic fatigue
Severe spasms (light and sound triggers)
Ears ring (both, days to years)
Depression/anxiety

Until 2019 I never had HAs, didn't know what anxiety was. Life was great. Now my main issue is chronic fatigue. I sleep well. I wake up feeling horrible almost every day. Can't think, function or hold head up. Some days I can barely drive 20 min to work. Some days I have to lay on the floor in my office. Afternoon/evenings are better. Going places and doing activities I (used to) enjoy cause anxiety for no reason with severe physical responses. About one week out of a month I have depression. In general, I don't have any good days, only bad or ok. I've been taking life one day or hour at a time for years.

My spasms started as only a head jerk left. Twitch to severe. Then both directions and on to other body parts. Triggered by sound, light or nothing. When I lay on my back my stomach spasms and may get a full stress response like someone scared the crap out of me. high heart rate, hyperventilate. Could be a few or hundreds over an hour. Riding in a car at night is worst trigger and I look like I'm having a seizure. Severity is much less now.

I also have an odd sensory sensation similar to dizziness when getting up quickly. Like eyes and ears stop working for a brief time, like a sneeze. Ear muscles contract, ring pitch goes up. eyes may blink or close, and my hands pop out like I might fall. Maybe neck or body spasm. It can be triggered by walking though a doorway as hearing reflections change, or nothing. May have none some days and hundreds others.

Can't be complacent with my conditions forever.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

John, Volunteer Mentor | @johnbishop | Jun 9 1:59pm

In reply to @kjaffee "Has anyone been diagnosed with this?" + (show)

Hello @kjaffee - There are a few discussions on functional neurological disorder where you can learn what others have shared.

-- Functional Neurological Disorder Diagnosis: https://connect.mayoclinic.org/discussion/functional-neurological-disorder-diagnosis/
-- Functional Neurological disorder next steps: https://connect.mayoclinic.org/discussion/functional-neurological-disorder-next-steps/
-- Functional Neurological Disorder (FND): https://connect.mayoclinic.org/discussion/functional-neurological-disorder/

SusanEllen66 | @SusanEllen66 | Jun 9 10:03pm

@rattlesnake
I know this is an old post, but I want you to know, you are not alone.

The spasms you describe, as well as many other things you are somewhat familiar to me.

To me it sounds like Stiff Person Syndrome . There are people here on the Connect who have it.

It’s very rare and it’s hard to find a Movement Specialist Neurologist. When you do the wait is up to 8 months!

I hope you are feeling better by now.

Colleen Young, Connect Director | @colleenyoung | Jun 10 11:10am

In reply to @kjaffee "Has anyone been diagnosed with this?" + (show)

Hi @kjaffee, I moved your question to this existing discussion:
- Functional Neurological disorder next steps: https://connect.mayoclinic.org/discussion/functional-neurological-disorder-next-steps/

I did this so you can read previous posts and connect with other members familiar with Functional Neurological Disorder (FND) like @rattlesnake @katcollins @rwinney @imagine1 @amber3212 @purpleturtle and more.

@kjaffee, it this a new diagnosis for you? What are your next steps?

Rachel, Volunteer Mentor | @rwinney | Jun 12 10:03am

In reply to @rwinney "@rattlesnake Your response is so uplifting and inspiring to me this morning because I understand your..." + (show)

Hi @rattlesnake, it's been a minute. How are you doing?

rattlesnake | @rattlesnake | Jun 12 4:53pm

Hi Rachel,
Thanks for asking. Up and down.
Jan/Feb/March were good for me. Best I have felt in 5 years, longest break from my issues. I was hopeful it was due to the techniques I had learned, perhaps back to a normal as I was going to get. However April was not good, March was Meh. Another disappointment but still better than years before. Physical symptoms not as bad, but mental aspect difficult, draining. Still seeing 'shrink and trying new meds, working with counselor.

Trying to understand my purpose in life. Last round of those thoughts I was OK with 'father' and 'husband'. Now that doesn't seem to work and I feel there should be something for me as well. Traveling and some of the activities I used to enjoy are no longer desired. My mind and body freak out with stress response. So I trudge through some of my days with seeming nothing to look forward to, when there are things I should be.

I have made some progress on suicidal thoughts, it's my way of feeling sorry for myself. I've been able to replace with 'wishing I could disappear', to not have to deal with the misery. But I handle things and life goes on. I lie to the world and say everything is great.

Being in the repair phase of my marriage has been difficult but successful. 20 years this Nov. The ongoing fights over nothing and things in the past are hard to deal with. I want to avoid unnecessary stress at all costs, but my wife needs to complain, blame and criticize me to move forward. I go into severe stress response. When I'm in darkness it seems I would be better off alone. Resentment builds.

I do have good days and have had good experiences & activities. Focus on the positive.

louise60 | @louise60 | Jun 12 4:58pm

In reply to @kjaffee "Has anyone been diagnosed with this?" + (show)

Yes

katcollins | @katcollins | Jun 14 9:27pm

In reply to @rattlesnake "Thanks. Went down Dystonia path, I don't have that I believe. Or at least I had..." + (show)

I’m sorry you are struggling. You are not alone. There is a FB group called FND HOPE that will show you that there are many of us out there. Have you tried an FND program such as Cleveland clinic or Mayo Clinic offer?
Kat

Eric | @westoneorama | Jun 15 7:31am

I was diagnosed with FND January 2024 at Mayo Rochester. I previously was misdiagnosed with Myasthenia Gravis, I started down this path years ago; in hindsight, I'd say my earliest signs of something wrong go back as far as 2014. Reading your posts, I am struck by how familiar yet different your experiences are from mine, if you know what I mean. Since my diagnosis, I've participated in the BeST Program at Mayo, and it was very beneficial. More than anything, it gave me some hope and restored some confidence. The loss of confidence was the hardest aspect of this condition to cope with. That and anxiety. The physical side had started to get quite bizarre around mid 2023; I developed very odd gait abnormalities. It was the bizarre gait that finally drove me to Mayo, so it turned out to be a positive. The BeST Program has helped me learn to manage this and other challenges, and I have started working out at a gym, which has also been very beneficial. I am on no prescription meds for this, although I take CBD gelcaps to help with anxiety. I should be getting counselling as well, but there simply are not enough mental health providers to cover the demand where I live (US Midwest). So I am doing what I can with the resources available to me, which has improved matters, but it is an ongoing job to manage this.

donnahanford933 | @donnahanford933 | Jun 21 9:25am

In reply to @rattlesnake "I found this digging around. Seems to confirm much of what I have learned and experienced..." + (show)

O have similar symptoms - different diagnoses. I checked out CPA.com for people with chronic pain. I want the results thy aspire to so will start utilizing their principles etc.
Good luck 💕

Rachel, Volunteer Mentor | @rwinney | Jun 26 10:08am

In reply to @westoneorama "I was diagnosed with FND January 2024 at Mayo Rochester. I previously was misdiagnosed with Myasthenia..." + (show)

Hi Eric @westoneorama, @rattlesnake and others in a similar boat -

As I sit here about to join a zoom meeting with my Mayo Pain Rehab Center support group and basically reread our PRC blueprint of a manual together (today's chapter is self-esteem), I recognize that living with chronic conditions means a lifetime of commitment and ongoing self-work. Understanding what and how to best manage is the first step, but application is the real chore.

The 4 pillars sum up the areas that will be ongoing challenges with many subdivisions within:

Physical
Emotional
Behavioral
Chemical

Like an addict in a 12 step program (that's how I see it) - the steps always have to be worked on and followed. It's a lifelong commitment to ourselves and our loved ones. Not too much burden - aye?

Anyway guys, I'm here with you in support that the struggle is real, but we have no other choice if we want to get the best out of our human spirit and time left here on this wonderful earth. Fortunately, my better days outweigh my worse which comes from constant, ongoing work.

Eric, I'm happy that you found help with the BeST program and it provides a blueprint for you to succeed with hope and self-confidence. Rattlesnake, once again I pat you on the back for your perseverance. Keep investing in yourselves and take life one day at a time. Replacing negative thoughts with positive thoughts may be our new full-time jobs. It took me quite a while to mourn the loss of my previous life, career and abilities, and it still hurts - I'm human, but I try to focus on what I can do, how I can help, and purposefully find my value. I am now CEO of my CNS (central nervous system), the rest falls into place as it can.

Stay focused and hopeful. We're in it together.
Have a great day!