Hello

[mavem100]

Hi there, this is my first post and I am not sure of where I should start. I feel very alone these days, I am always unedge when it comes to stress management and how to make the right choices. Since my diagnosis, I have been afraid that I will never be able to do anything in my life, paralysis, poor vision, migraines, non-epileptic seizures, and the tics. It always happens at random and I can never know when the next time I will be able to feel safe to drive. No one knew what was wrong with me and I drove myself to every appointment, I was only able to drive for two hours after that I would lose control of my foot and my vision would start to get blurry. I was careful about how I could drive, where to go, and how I was sleeping on the bed, seeing everything around me, not getting help, and being alone in a room where you are not checked on. I had a nurse practitioner (not the same person who diagnosed me) tell me last week that everything that I felt was all in my head, and that everything about my health and who I am was all my fault, they gave me money back, and threw me out of the clinic. I do not know that the next time I go to a clinic, I will be told that it is all in my head and to just deal with it. Right now, I am getting help for other things that are related to my medical, with no insurance and I am getting a new job soon that will help me get the benefits and a good salary. I am worried that the lack of resources that exist in the area I live in does not have the resources that I need to help me get on my feet. I am worried I am not going to make it in life, I'm not sure how I am supposed to feel I do not know where to turn to or be fruitful and feel alive. I was able to go to a Job Corps center and it saved my life, and while I was there I struggled with many things and even with FND, but it was worth it, I earned three trades, and was in SGA. Now I am struggling to know where to go, luckily with the training I have I am going to use it to help people. I just do not know where I can go, where should I go, and how I can be independent reach my goals, and help more people. I just wish I knew where to start.

[210272]

Hi mavem100,

I am so sorry you had such a negative experience with that nurse practitioner. No one should be made to feel it's their fault they are unwell or be thrown out of a clinic. I would recontact the person who diagnosed you and let them know about this and I would also let the American FND Hope people know about it too, as well as your primary care doctor.

If you haven't already seen a migraine specialist and an epilepsy specialist I would ask your primary care doctor to arrange the relevant referrals for you, via telemedicine so you don't have to drive.

Congratulations on the new job and I hope they will make the relevant work place accommodations for you. Your desire to help other people is admirable and I hope you get the support you need and deserve so that you can achieve your goals.

[Littlecook]

Good afternoon I'm sorry you are suffering so badly and for someone to say its all in your head is disgusting, have you seen your neurologist maybe get make an appointment and tal to someone, I do know how you feel like it's in your head its getting the right person to listen to you and get the answers you need , I feel the same onone wants to know or give you a follow up appointment.

I can't work with my issues dizziness stroke like symptoms and feeling very tired, I also suffer with NF1 anxiety , my list just goes on but if you get the right consultant maybe you will get you answers .

Good luck please keep us updated.

[Lady4]

Hi, can I ask what state you are in? That clinic should be reported and that nurse retrained, its not acceptable. FND is real and not faked (see my other post).

Did you say you learn't three more trades and had a new job now. Can I ask what the new job is.

Life isn't over as you know it, just a little resetting and adjustments required. Clearly you have become overwhelmed possibly by a storm of events.

As for driving, I heard someone mention a weighted seat pad and other sensory elements and techniques that helped them. I will see if I can find the post for you.

On our education class we are told to concentrate our efforts initially on the biggest piece of the pie. What is it that is the most concerning symptom..

The lack of knowledge and treatment by some medical professionals only adds another layer of stress.

Try and practice mindfulness, be in the moment, take it all in and try and relax. If this makes symptoms worse try and add a sensory element (maybe a weighted blanket) to keep you grounded/feel safe (there are lots of other options).

Most importantly though, know your not alone and treat yourself with kindness.

[mavem100 in reply to Lady4]

Hi there right now I have fully recovered but have minor symptoms that I had managed and learned how to manage. Those are good points though, especially with driving. what has affected me severely is that I have to wear special glasses in order for me to see, FND has affected my eyesight as well, and learning how to manage what triggers the symptoms has helped me as well. A weighted blanket is something that I would need and manage my sensory issues that trigger the symptoms. I started to chew gum which helped me focus on my tasks and work-related goals. Thank you for reaching out to me thank you for letting me know.

[Lady4 in reply to mavem100]

So pleased that you are learning to manage your systems, I remember chewing gum as being one way of increasing sensory input. Sensory System: ● Touch ● Smell ● Sound ● Vision ● Taste

Heres a few others too:

Mints/Gum (like you use)

Ankle Weights

Rocking Chair: Vestibular (Am I moving, am I spinning?)

Weighted vest: Procrioception (where our body is in space)

Mirrored Movement: watching walking while on the treadmill or above ground

(Pretty sure there is a clip on Re-Active's Instagram where they put the treadmill on its side against a wall and the client moved her feet in the movement she was watching on the phone in her hand)

Our list from our class was extensive and we were all throwing suggestions but I think the below will help you get in the right mindset, esp if you align it to the sensory system, if you know what I mean.

Then on the flipside, sound need to reduce sensory input:

Sunglasses

Headphones

Fidgets

Eye Mask

Although gum, ice etc can be used for both so think it depends in what sensory input you are trying to enhance/reduce because you may be "sensory seeking" certain inputs and "sensory avoiding" other. Thats when you bring in the sensory elements to help manage but its trial and error and works well for one might not be quite as effective for another and thats where they might need to add another layer.

Can I also ask why and what type of special glasses you need? Always curious to learn more. These were mentioned to reduce sensory input:

FL- 41 glasses (migraine glasses)

Sounds like your doing well.