I Give Up

[fbturner80]

I have been diagnosed with FND in July of this year. I was Paralysed (locked in syndrome) completely back in 2012 with possible diagnosis of FND which I was never told about.

So I was rushed into hospital 3 times suspected stroke, with my right hand side completely gone with Migraine constantly going. They didn't know what was going on. They ruled out Stroke but speech was slurred and facial palsy to my right side, walking was struggle and had no strength to my right side.

Since then I have seen a Neuro Chap and they said I have FND. I now am suffering with breathing problems - where my brain Just forgets to Breath.

I cant get an appointment to see Neuro Psychology until March next year. I have called the ambulance out numerous time.

I give up.... whats the point no one gives a monkey. What do I do.

[210272]

If you call the neuropsychology team and let them know that you might be able to accept a cancellation you may get seen earlier - that's a long to wait after all you've been through. No one should have the FND diagnosis in their notes and not know about it. You have to be assessed for it against certain criteria and be told what the 'positive signs' for it are. FND and migraine can mimic stroke in some people and they should have explained that to you. I would ask to be referred to a migraine specialist too. The wait times can be lengthy but at least get on the list and, if you can, access content like The Migraine World Summit so that you are informed and empowered to manage your health. Ambulances can give us sensory overload so if you do have to go in one again, take that into account and ask for help, just as you'd ask for mobility support if you were travelling on public transport.I know it's hard when you are feeling unwell but you do need to challenge why you were not told about your FND diagnosis as this happens far too often.

[fbturner80 in reply to 210272]

Thank you for your reply I have seen a Migraine specialist and they said I suffer with Migraines with Aura… they put me forward to see neurologist and they confirmed FND. I am on the waiting list for cancellation of the neuropsychology, but appt still in March. I called my GP again yesterday as my breathing is still getting worse. I suffer with Endometriosis Fibromyalgia Migraine with Aura and just Diagnosed with Colitis Chrones and Irritable Bowel Disorder. So my body is going through a lot.

I am so tired of being in so much pain and discomfort. Now breathing issues on top it’s impossible to feel like my body can relax.

[210272 in reply to fbturner80]

I hope you can get the support you need very soon. Migraine currently isn't listed as a functional condition so you might want to ask why they think you have FND (and point out that you weren't informed about this dx to start with, which is very wrong) and ask what you can do to manage the symptoms when you have a dual diagnosis and are medically complex because of your other conditions. Sometimes it's hard to know what to treat first but a good treatment plan that you agree with your doctors can help a lot. Especially if migraine gives you cognitive impairments. (If it does, you can ask for cognitive tests which can be very interesting, especially now new therapies are being developed eg the one for MS)

Your poor body has a lot to deal with and it can feel very rough when you're struggling to breathe. If I get to that point, which I don't very often I just try to remember that things that a lot of people do on autopilot, like walking and breathing, actually take mental effort for us. When I remember that I relax into it a bit more and can then do my breathing exercises which boosts the rest/digest/repair system.

You're doing great with what you are trying to do to get better and with more support from your health team - and your own self management of symptoms in between visits - I feel you will see improvements soon. I really like the system SuperBetter ... it's more fun than some CBT processes and although it's screen based it's not too harsh on my system. Do you have adaptive lenses for screen use? I really like vista mesh lenses and my optician let me try a pair before I spent money on them. I don't take much in the way of mediations but they reduce my headaches so I can reduce the meds too ... gotta love a win/win, eh?

Thanks for reaching out - that's a mentally healthy thing to do, in my book

[Leesaloo]

I too had the breathing problems you mention, my non epileptic seizures that I had then, while having them my breathing would slow and then stop, I was stuck inside my head every time unable to communicate, the seizures were caused through noise, bright lights, fatigue and sometimes it seemed like nothing caused them, as I put, some affected my breathing, some locked my body up so tightly it was really painful until the seizure passed and my body could loosen up. They lasted roughly 3 years but got less and less over that time. 7 years on, I only have the occasional one now which is caused by fatigue mental or physical or both together. I was eventually told by a nurse not to worry about the breathing as when I fall unconscious the brain will start breathing on its own again. I was accused of taking drugs by one ambulance paramedic as by the time they got to me I was well into the seizure and couldn’t respond but I heard everything they said. Still 7 years on, I’ve improved, have a bit of life back, seizures few and far between but my months re habilitation in London’s queens made so much difference, just learn how to walk without dragging or limping one leg was a godsend for me. Hope this helps as I thought I was going to die for at least 17 months before getting to Professor Edwards who explained what was happening to me, I had all the symptoms over 2 years of a stroke, Parkinson’s, epilepsy and others I don’t know but after mri, ct scans, blood tests, etc I had nothing wrong and was essentially healthy apart from the symptoms, it was a very scary time for me and my partner, sorry it’s so long but hope it helps. 🤗

[fbturner80 in reply to Leesaloo]

Thank you for your reply. I hope you get some relief from your issues. Sounds like you have gone through a lot as well x

[Clarabella47 in reply to Leesaloo]

Also experienced this and still am. Had an Ambulance on Thursday and 2 separate dissociative attacks where the paramedic said once I pulled through and could talk..."I think we just saw 2 different personalities, D.I.D. iv since been referred to nuerologist again and waiting an app, and went to an app with a lady volunteer for NHS, who listens and responds but it is confidential and unless I am a threat to myself or others it stays with her. It's cause by trauma, it just come out one day and all too over.