New to Group

[Irietrekker]

I have FND and have been struggling with it for a year and a half. It causes severe seizure activity, tremors and other symptoms. I feel like I am on an island because of my illness. I am looking for others who are struggling with the same issues I have and trying to manage each day as they come. I am also curious to see if there are any Zoom support groups for FND. Is anyone aware of one?

[ginganinja]

Hi Irietrekker

Have a look into medical cannabis oil and flower for your symptoms.

I have been successfully treating my Acquired Brain Injury and FND since 2016 and now have a legal private prescription in the U.K. to manage my condition.

It has considerably improved my quality of life and taken my seizures from 30 a day to 2 mild seizures in a year.

Hope this helps you.

[Irietrekker in reply to ginganinja]

Wow. That is incredible. I will discuss this with my doctor at my next appointment. They have been giving me so many different types of medication that don’t stop the seizures or tremors. This may be what I need. Thanks for the recommendation.

[Irietrekker in reply to ginganinja]

My doctor agreed with approving medical cannabis oil and flower (I'm in the US). I will try it out and see if it slows down the seizures and helps with my chronic pain. Thanks for the recommendation.

[Lady4]

Have you checked out the FND Hope site. Also check out my posts.Your not on an island so many others have it and probably worse than what your experiencing, although I know its hard to believe that.

My son had the spasms, seizures and other symptoms for a long time, still experiencing headaches and chronic pain (ie bad headaches) but holidays now so don't think they are as bad first thing at the moment.

I think anxiety is a trigger that makes things heighten so be kind to yourself and meditate as this can help.

Were you diagnosed with it right away, for many of us here, diagnosis and getting specialist referral has taken ages.

After a year after original chonic pain diagnosis we got to see a neurologist and that was only because I pushed for that. FND wasn't highlighted so that didn't register until a physio mentioned it nearly six months later. Needed OT and that referral kept getting rejected. Over 12 mths later, I had the call, I thought, we don't need you now, he can walk downstairs.

If you are having lots of spasms have a look for resources on grounding techniques something a neuro physio asked us to try as my son was just lying in bed all day till they passed, usually when school had ended unless something distracted him from the pain.

The neurosymptoms.org.uk was the site we were referred to and now we are awaiting "talking therapy", something I should have just paid privately for last year but you live and learn.

[Irietrekker in reply to Lady4]

Thank you for your reply. It took a long time for the FND diagnosis. I was in pain for over a year and had moments when I would blank out in the middle of work. I was initially diagnosed with an autoimmune disease, until I started having severe seizures to the point I would lose consciousness. I ended up in the hospital and it took them 14 days to figure out I had FND and not epilepsy or autoimmune.

I have started mediation to bring down the anxiety. I’ve also heard that yoga helps. I do attend weekly OT and physical therapy. That has helped tremendously. I will check out your posts and look at the FND site. Thanks again for responding. This is very helpful.

[Lady4 in reply to Irietrekker]

My sons drop attacks were random but usually brought on by unconscious anxiety, luckily hasn't had any for months. Did you read the story cartoon book I mentioned where the character is question learned to sense when a seizure may happen and she took herself out of stressful situation. It also mentioned some techniques from recollection, I thought a useful research as well as the handbook for children/adolescents (link on my profile) which I think explains a lot in plain English but in our experience the way from initial consultant to diagnosis to help offered is very different for most but a good framework.

[Irietrekker in reply to Lady4]

I think you are right about the unconscious anxiety. This seems to make my attacks worse. It is also likely making my pain worse. I am not sure.

Can you resend the link to the cartoon book? I also signed up for the US/Canada support group. I think it will be helpful to hear from others. I have learned more about this illness in the past 4 weeks than I had in the past 2 years. Having a better understanding is

[Lady4]

Yes, I know what you mean, we were signposted to sites, not much emotional support given and its just me and my son against the NHS and the Education System and final years.Will see if I can copy from my site and paste.

My advice just breathe and as for medication, we were offered para and ibro when legs went crazy and caused chronic pain and thats it and stopped both as he didn't think it made a difference. Left waiting yet another referral which no doubt I will need to chase up