Neuropsychologist visit : I've got my... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Neuropsychologist visit

englishmumof2 profile image
19 Replies

I've got my 3rd appointment with neuropsychologist in St George's next Wednesday.... do I explain how stressed I am about the house situation? I don't want to sound like I'm whining or complaining as financially we're ok , but I struggle to sleep, when I do I dream of the Landlady saying we had to go as I kept the house a mess, I get chest pains and have trouble breathing (not really relived with asthma drugs) I know they are panic attacks. I can't make decisions and when I think I can the panic sets in " oh god the neighbors will complain about noisy kids or dog, we'll get kicked out, I won't be able to keep up with the house work, what if there's no parking I could end up getting shouted at for parking in the wrong place... what if it's near the kids who've bullied my son last year, if it's carpets we might stain them, if it's wooden floors what if they get scratched..I know it's stupid to have these feelings but I can't switch it off! Wish I was a stronger person to say "to everyone else " all kids are noisy and dogs do bark sometimes, hey we can clean the carpet and fix any scratches... but it's still there.. maybe he'll give me some clonopin.. that was great for panic attacks in NY only ever took 1/4 of a tablet even still after 4 year got 27 pills left... no good now as they are out of date but they really took the edge off... highly addictive though 😱

Or do I do my usual hey it's ok I'm good! Yes I know what you'll say , I just needed to get this out of my head today as I've o ER done it and my left side is in pain and I can feel headache creeping behind my eyes, on the plus side I have a newer bed to sleep on tonight 😀

My mums in the U.K. Now so she will drive me the 1 1/2 -2 hr journey which sound ok but her driving scares the crap out of me. She doesn't pay attention drives to close to things.... oh no... maybe I should just drive my self and get her to collect the kids 🤣

Hugs 🤗

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englishmumof2 profile image
englishmumof2
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19 Replies
nurmihusa profile image
nurmihusa

Absolutely you dump ALL of that on him. ALL OF IT. Our condition is all about being highly reactive to stress. Unless he understands HOW MUCH STRESS you're under he can't POSSIBLY understand how badly off you are.

And there's no "well, this stress isn't okay to talk about, or this other stress isn't what most people would count as stress so I won't mention it". None of that nonsense. All and everything that stresses you is EXACTLY what he needs to know. All of it. If thing A isn't stressful for your neighbor that is entirely irrelevant. What matters - the only thing that matters - is what is stressful for you. This is about YOU and not about what other people might think you are allowed to stress about.

Frankly it's just that kind of thinking that gets us into this. I know. Boy, how do I know.

I wrote out a thing the other day for my cousin who keeps asking how I'm doing. I came up with a list of FIFTY FIVE separate things going on just that day that were stressing me and that was by no means a complete list. FIFTY FIVE!

I have absolutely no doubt that if you typed up a similar list of your stressors, from carpets to housing, to noisy kids to water rings on the nice table to world peace, etc...you'd give my list of fifty five a run for the money.

Seriously. Write down a list. Leave nothing off. You will be floored. Absolutely floored.

Hugses!

nurmihusa profile image
nurmihusa in reply to nurmihusa

Frankly, as stressed out as I am and BOY AM I STRESSED OUT - when I read what you're going through and also read between the lines, I don't know how you get out of bed in the morning?!?!? You are being stressed waaaay more than me, SuperMom!!!

englishmumof2 profile image
englishmumof2 in reply to nurmihusa

Actually a list is a good idea... I was thinking going through my posts on here and letting him see what I'm writing when I'm feeling they way I do! Of course I won't show replies but I think he'll see I'm actually like a duck! Calm on top but paddling like a maniac under the water ..

I'm so glad I've got you to all use as my sounding board 😍

nurmihusa profile image
nurmihusa in reply to englishmumof2

Lists are invaluable. Writing things down is invaluable. As I was being tossed about between medical professionals when this condition finally came to a head I got so sick of explaining what I'm going through that I put it down in words and handed it to the next one. What was particularly useful was my loooooong list of coping skills and of all the therapies and meds I tried and that mostly failed.

They assume, since they know nothing of you, that you know nothing. That you are a blank slate for them to experiment with. Nothing could be further from the truth. You are (we are) incredibly experienced with how to manage our condition. We have tried all kinds of things and have a very good idea what works and more importantly what doesn't work for us. If we don't tell them this, they will insist on wasting everyone's time by putting us through failed meds and therapies.

The thing is we need new ideas from them, because the old ones aren't working so well. Fresh ideas are always needed because solutions are never permanent. The sands are always shifting beneath our feet.

nurmihusa profile image
nurmihusa

I started a new thread with a link to an excellent (and funny) article about anxiety and stress.

theatlantic.com/magazine/ar...

englishmumof2 profile image
englishmumof2 in reply to nurmihusa

Just read it so so true!!

nurmihusa profile image
nurmihusa in reply to englishmumof2

I always recommend it to people who have no clue what real anxiety is like.

malalatete profile image
malalatete

List the issues and also list the things you want help with - so how to manage anxiety so it doesn't keep you awake all night. What can he suggest for the panic attacks? What support can he offer to get you any other help that may be available locally via a GP referral? My neuropsych has always been my go-to person - got me hydrotherapy, art therapy (didn't ask for that one, found it rather funny - and fun), a specialist gluten ataxia neuro, and Prof Edwards. My various GPs were all totally cr@p and generally didn't respond to me - but if I came brandishing a copy letter from Anne....different story.

Enjoy your appointment and make sure you do a proper download. It is what they are there for, after all.

nurmihusa profile image
nurmihusa in reply to malalatete

How was the hydrotherapy?

I do agree with all the replys you are getting from all on here and we all suffer from different symptoms and how we got FND. But a big but for me is my dr treated me for depression and anxiety for a year even though I never had it , I was just in never ending pain, but even the nuero psychiatrist last week at St. George's started with all the same questions I've been through before. Example, are your parents divorced, did you have a happy childhood, have you suffered depression in the past, have you had any illness, any operations, etc. I've answered NO every time, to all appointments and he still went through them again, I was getting quite angry 😡 as been through all these professionals now including professor Edwards and this was a following appointment from professor Edwards, I felt they are trying to push me into a box of my past has caused this, NO matter how many times I've wrote it and said it, I was happy, good 😊 job, good pay, walked at least 5 miles every day with dogs, had friends, my parents are still alive and married, no one close to me has died. I got bloody sciatica which then went up my shoulder into my neck, when chiropractor straightened my neck and jaw it was the final pain that put me into a seizure and shut down. They just don't want to accept what I'm saying. I'm worrying for you as you have awful symptoms from FND but your stress is causing you anxiety because of the situation at home and how your having to cope with all of it plus your symptoms. I hope they won't overlook your symptoms and just go for the stress your having. Maybe it's just me but I've been told so many times I have depression and anxiety or migraines when I know I never had. Hope this makes sense to you, wanted to reply but mum and daughter came same time today and just not with it since. I've got my last appointment in London at the hospital where you go on a list to be an inpatient next Wednesday, I'm just so worried they won't put me on the list and I'll be left with nothing. 😳 😳 scared that this will be my life now with no help to go forward. Hugs 🤗 hun

englishmumof2 profile image
englishmumof2 in reply to

You poor thing! My fnd isn't that bad! I've had loads of psych tests over 4 years! Like you child hood was fine , parents divorced but I have no recollection. Of anything bad ! See I think even if it was a big life event that cussed the fnd they still treat the symptoms! I'm on ssri for my jolts so maybe the have kept me a little calmer.... I just can't make a decision the thought is being surrounded panics me , it panics me to choose the correct house as it is expensive , I worry about the arguments of my husband and my 14 yr old. The adult doesn't get how to talk to the 14 yr old and blames instead of understanding, 14 ur old goes off his head, adult shouts and name calling, 14 yr does the same then threats to harm him self! Just a little bit of stress.... I'm so pleased you've got in patient next week... oh gosh I'm there Wednesday.... shall we both wear a red rose...? It would be good to meet even if it's just to give each other a hug x. Let me know which ward your on and I'll pop in to see you x

I'm sure it will go ok xxx

in reply to englishmumof2

I did St. George's last week, next week is Queens or similar in the heart of London in the famous children hospital, I keep forgetting name. Would have loved that 🤗, this appointment is just to get them to agree to put me on the waiting list. 😳😳😳😳

nurmihusa profile image
nurmihusa

If this is only all about reacting to stressors... then they need to actually examine them honestly. Otherwise they're not doing their job.

They have a this little list of check boxes which mean virtually nothing. Nothing! When it comes to stressors, it not what they are, it's how you react to them.

Walking down a dark street in L.A. when I was 21, I was accosted by a very scared guy with a gun who demanded all my money. Did I fall apart? Not at all. I was as cool as a cucumber. I told him to go away. And he did. And I kept the $20 I had in my pocket. I was living on $54 a week including rent. No way was he getting my money.

Not so many years later, I sent out a graphics job with a misplaced comma. I lost it. Fell apart.

So according to their prescriptive list, the first instance must have been a stressor (it wasn't) and the second couldn't have been (it was).

If they are REALLY looking for stressors, THEY ARE FAILING - checking boxes on a predetermined, generic list is utterly meaningless psychologically. They are simply not doing the job they have given themselves.

Now then, you have other clear possible causes and they are ignoring them in favor of their imaginary magic list. Excuse me, who's the crazy one?

Ahem.

englishmumof2 profile image
englishmumof2 in reply to nurmihusa

To true. . Ina crisis I'm amazing... but everyday choices of choosing a loaf of bread can leave me stuck unable to move! It's stupid stuff... honestly I have so many choices of house I should be yippee.... but terraced ones are to claustrophobic I can't even get in a lift with out the panic raising. I hate being a passenger in a car as I think we will crash... going too fast scares me ... all daily silly stuff 😝 thing is before the FND I was fine.... it's like the FND has made it so normal life things cause problems , the forgetting things are a pain... tablets I forget to take if I don't go to the pill box I've used for 9 years. Inhalers are the hard one as I will need to remember to write the inbred daily as the numbers show if I've taken my puffs or not. But I have to remember to write the numbers... lol

In itself stress does a lot of damage to the body if it is left unchecked. They should not be ignoring stress and having less stress might make you more able to cope with everyday tasks.

When it gets to the point you are dreaming about stress it's almost like you have PTSD.

englishmumof2 profile image
englishmumof2 in reply to

🤗

cocoferraro profile image
cocoferraro

hI,

I have had a neurological Funcional Dissorder for 5 years, I also rent my property and have four dogs,

we were extrememly lucky to find a place that had land and the landlady did not mind dogs, she won't rent this property to us for very long. don't know what is going to happen to us. there are also stains on the carpet and other wear and tear, so can simpathise with you.

KEEP CALM, yes I still feel all the anxiety that you are experiencing but they won't prescribe the pills to us forever. the answer, I think is to move. Don;t worry know how you feel, want to take every pill in the cabinet sometimes, just to make things go away. can't talk now, will check in tomorrow,

please try to keep your chin up, you are worth more than this, speak more later,

take care,

xx

englishmumof2 profile image
englishmumof2 in reply to cocoferraro

Thank you cocoferraro

I understand.. ..I lived in a crap house 7 yrs ny. That's why I won't settle now.... it's not just me it's my autistic kids.....thank you xxx

Junebeatle profile image
Junebeatle

Yes, tell him everything you’re feeling. Try to not play the “what if” game...I have OCD my whole life way before FND & that was my cognitive distortion with everything the “what if’s” which only sends your brain into a worried state & anxiety sets in. Literally in your head say “shut it down” when that train of thought begins. Be mindful of it & stop it dead in it’s tracks for cognitive training. Go ahead if you need Klonopin to cope, so be it. My FND got so bad this year after being in remission for years, I had to start Valium 7.5mg for 7 months to sleep (my body was shaking all night & I was losing sanity) I’ve never needed psych drugs, but I couldn’t live like that either. Be kind to yourself with this illness, we’re all so hard on ourselves with these expectations! This disease is awful & realize it’s honestly no different than MS or Parkinson’s, it’s just they don’t have enough information to treat us yet. Would you talk to a person with MS confined to a wheelchair like that? No, so give yourself some credit. You’re doing the best you can & that’s all you can do:)

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